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Why does my Oncologist dislake the pill Xeloda??

Cully43
Posts: 1
Joined: Aug 2010

I was recently in my Oncologist's office for a choice of treatment. He prefers the IV type with a post and a 48 hour pump set up in my home. I prefer the drug Xeloda because it is easy to take and far few side effects. What do you think?

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

I did the xeloda,and radiation at the same time,and only had the usual problems.Cramps,loss of appetite.But I thought the xeloda was better than the pump.It was a lot easier to take,and no hassel.I think most of my problems were from the radiation.Good luck.Xeloda is just the pill form of 5fu,and I think it worked pretty good.I was stage 3 before and now I'm NED.

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

My chemo was Oxiplatinan, Avastin (for six) and Xeloda, After eight chemo treatments, I'm just going to be on the Xeloda (for how long I don't know, Just know that this month I won't have oxiplatinan due to low red blood cells) But my CEA count went from over 2000 to 57 the 5th treatment, 38 the 6th treatment and 17 as of the 7th treatment. Not to shabby at all.
I like my xeloda over what I understand the 5FU pump is.

Jaylo969
Posts: 827
Joined: Jan 2010

I have taken IV 5Fu & pump and I have taken Xeloda. My experience was that taking Xeloda was far more convenient than the pump but I had fewer side effects with the 5 FU pump. Just me...and I have always been atypical.

Welcome to the board Cully43

-Pat

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

There are not usually less side effects with Xeloda. In fact, foot and hand syndrome is usually worse with it. Some people have a harder time with blood counts on it. You just don't know which one will have better or worse side effects for you.

My oncologist prefers to use 5FU the first time. He has admitted that it is a comfort level thing for him. He's had a lot more experience with it, and personally he's had more issues with blood counts for his patients on Xeloda. But while he pushed for 5FU, he would have let me take Xeloda if I'd insisted. I decided since I already had to get oxaliplatin via IV, it wasn't that big of a deal to do the 5FU. One other issue he brought up about Xeloda is taking of pills. He's found that for some patients, they don't follow the directions as they should, or don't take them if they are having a lot of nausea. When you are hooked up via IV to 5FU, it would be rare for a patient to disconnect themselves and not get the drug that the doctor expects they are getting. But when they are taking pills, it is a lot harder to make sure they do it, and do it correctly.

If I have a recurrance, I think I'd try Xeloda next time. I had a really rough time with oxaliplatin, and 5FU - developed allergies to both. So maybe Xeloda would be easier for me personally. I hope I NEVER have to find out!

abrub's picture
abrub
Posts: 2155
Joined: Mar 2010

His feeling is that with the IV, you know exactly how much is getting into your bloodstream. With the Xeloda, absorption from your stomach can vary.

Side effects with either vary for individuals. I hear of a lot of people who found the side effects from Xeloda to be worse.

The pump isn't set up in your home; you wear it in a fanny pack. I went to work with mine. You only have the IV pole while you're receiving your initial infusion at the clinic of the Oxaliplatin and Leucovorin (and Avastin, if given).

dorookie
Posts: 1736
Joined: Jul 2007

The first time I did the IV type, it was the worst thing I have ever gone through, i did have radiation during this time too, so not sure if that had alot to do with it too, then within like 5 months the cancer came back, surgery again, no radiation, but then 7 months of Xeloda, max dosage, 14 days on 7 days off, and I have been cancer free for almost 1.5 yrs...I like the results I got with Xeloda, less side effects.

Good luck...

HUGS
Beth

taraHK
Posts: 1961
Joined: Aug 2003

Hi. I've done both 5FU (48 drip) and Xeloda (pill). As others have said, the side effects are different. For me, the 5FU hammered my white blood cells - Xeloda is easier on that for me. However, I'm having quite bad hand/foot effects with the xeloda, which I didn't have with 5FU. Psychologically, I prefer the 5FU - -I had to stay in the hospital for the 48 hr drip!

It might be worthwhile asking your onc why he prefers the drip. I like it when my doc gives my evidence of treatment effectiveness! But, I respect when he has a preference for one drug over another based on his personal experience with side effects, or something else. I do think he/she should be able to defend his/her preference.....

Good luck and best wishes

Tara

classicman's picture
classicman
Posts: 34
Joined: May 2010

I did Xeloda along with Chemo and thought it was ok, just normal side effects, my life style and occupation made it the pill of choice.

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi,

I have taken both the 5FU pump three different times and have taken Xeloda two different times (am currently on Gemzar, Avastin, & Xeloda). I have had more issues with the hand/foot syndrome while on Xeloda compared to 5FU. I had more intestinal upset with the 5FU and my hands turned really dark while on 5FU. I prefer the Xeloda over 5FU & have had good results on the cancer with both. I hated the pump- the thing was heavy, I couldn't sleep well with it, couldn't take a normal shower, the adhesive used to put over the needle on my port itched and was uncomfortable the whole time, and I had to go back into the oncology office for an additional appointment to have it taken off after the 46 hours. Need I say more? I hated the pump! I'm actually willing to put up with the hand/foot syndrome I get with Xeloda (not everyone gets it) so that I don't have to have that lousy pump on!
The recent literature I read comparing the effectiveness of 5FU to Xeloda showed that Xeloda is at least as effective as 5Fu and one study even showed Xeloda a couple of percentage points more effective than 5FU.
Some oncologists are just hesitant to stray from the norm. 5FU has been around longer, so it has more studies and data, but there is definitely plenty of data around now on Xeloda to show its effectiveness, so I don't know why your onc would be hesitant.

Maybe one thought is that it is dependent on the patient faithfully taking the prescribed Xeloda pills daily and on time. They know exactly how much you're getting if you have the 5FU pump- maybe that's it. I'd talk to him about it further.

Best wishes,
Lisa

dschreffler's picture
dschreffler
Posts: 58
Joined: Apr 2010

Had same discussion with my Onc and it comes down to numbers of participants in the studies. Not enough critical mass to say Xeloda/OXi same as Folfox as standard of care for post surgery chemo. There are studies that show similar effectiveness, but not with numbers that make Oncs comfy I guess. In my decsion making and discussions with my Onc, there are more studies supporting Xeloda for neoadjunctive, and not as much for post surgery.

I was able to get into a clinical trial for neoadjuctive chemo and pulled the xeloda/oxi mix. I'm now on Folfox with pump post surgery. The pump during radiation would have been a pain. I don't mind the 48 hour pump too much now, but pills are a lot easier (if you remember to take them). There is no forgetting the pump.

I'm not sure the side effects are that much different, are they? Xeloda has the foot hand issue that 5-Fu is less common with.

Just my perspective, your mileage may vary.

LOUSWIFT
Posts: 372
Joined: Aug 2006

I took 15 weeks of Xeloda 5,000 mgs per day. My onc said he preferred the pump because it was more effective. He said there was less than a 1 in 10 chance cancer would return with the pump and a 1.0001 to 10 chance with Xeloda. The difference I saw was I wouldn't need a port installed in my chest and the bad things they can bring. Xeloda gave me very bad hand and foot syndrome- bleeding feet and hands; swelling; loss of some nails on my feet and pain to touch anything with my hands and walking was an exercie in determination. Then there was the nights when I would be asleep and it felt like someone stabbed my foot with a knife and twisted it for about two minutes. Still damage to my feet. You will need heavy applications of bag balm (utter cream for us farmer types)if you get hand and foot syndrome. Fatique was always there and in the 14th week I almost quit...it was that bad! Now my CEA is high the cancer could be back four and a half years later. Would I do Xeloda again? Hard to say but it does affect different people differently. Buddy of mine had almost no side effects at all.

dschreffler's picture
dschreffler
Posts: 58
Joined: Apr 2010

One more thing.. cost. I believe the Xeloda is more costly right now over 5fu pump. Check your insurance.

Betsydoglover's picture
Betsydoglover
Posts: 1256
Joined: Jul 2005

This discussion has come up many times on Colon Club. I've posted below a copy of a post from today that pretty much says everything that has been said before.

I've been on Xeloda twice. My onc actually favors it over the pump - mostly because it is usually easier for the patient. A few years ago she was horrified when she went to an oncology conference and attended a practice mgmt session - the speaker talked about not prescribing Xeloda, because the pharmacy gets the $$$ AND the oncologist loses all that billable infusion time from the 5FU pump. Not saying that is your oncologist's motivation, but it is apparently out there.

Anyway, here is Jaynee's post from Colon Club today, which, as I said, sums up the many Xeloda vs pump discussions we've had:

>>IF you are a patient who the doc thinks won't comply then nope, Xeloda isn't for you.
Studies have shown that when compared with 5FU, Xeloda has been proven to be just as effective in every study and most studies actually show an advantage with the Xeloda in terms of tumor progression and/or tumor regression
Xeloda, however, is expensive and there could be insurance issues although from what I have been seeing more and more on the club, that seems to have become a moot point (but I could be wrong)
Every study has shown that most patients do do better (side effect wise) on Xeloda v infused 5FU, however, the hand/foot syndrome with Xeloda is considerably worse. Please, don't confuse hand/foot syndrome with neuropathy from oxi - not the same thing. Also, know that not everyone gets the hand/foot syndrome (I never did during chemoradiation and for the other 5 months I was on Xeloda alone) and most people (again, not all) can avoid or minimize those problems by being proactive and using a cream before any problems arise.

Personally, I tried the infused 5FU (granted for only one week during chemorad) and HATED it! Yep, I hated the pump but I also noticed that (a) I was way more tired on 5FU (b)I had no appetite on 5FU and (c) the gastro side effects were much worse on 5FU.....again, that's only my experience.

Please remember that Xeloda is simply NOT the oral form of 5FU. It doesn't just 'turn into' 5FU after swallowing those pills. It is converted in the body, via some complex mechanisms into 5FU and actually doesn't complete that process until it 'meets up with' the TP enzyme which is found in high concentrations in tumor tissues. These are reasons believe to explain why (a) it is generally tolerated better and (b) why it tends to work better. Remember that the systemic 5FU is going all over your body and yes, while it does come into contact with tumor tissue, it also, as 5FU comes into contact with healthy tissue. One other very important aspect to the difference is this. Infused 5FU requires leucovorin and although technically NOT a chemo drug, the leucovorin is believed to be the drug that tends to exacerbate the side effects of the 5FU.

http://chemocare.com/bio/leucovorin.asp

One thing you do need to be aware of with Xeloda is the ingestion of folic acid - a big no no during chemo. Something that oncs tend to forget to tell their patients is that in the USA and Canada, our grains are fortified with folic acid so you need to be aware of this. You shouldn't be taking a folic acid supplement and you should look carefully at your multivitamin. Most contain at least the minimum daily requirement of folic acid and many contain much more. Combine that with a bowl of cereal (most are also 100% fortified - read the labels), a sandwich with lunch.....bread....more folic acid, and some crackers if the tummy feels upset and possibly some spaghetti and you could have some issues. That's not to say you can't have bread or spaghetti.....but you just need to be aware of the whys and ramificiations of folic acid and 5FU but in particular Xeloda therapy.

Something no one else has mentioned but I will is the psychological impact (at least for me) of taking the pills over the pump. Granted, in my circumstances, I was looking at the pump for 6 weeks 24/7 which is a far cry from the FOLFOX protocol of the pump for two days.....which personally I believe I could have managed. My point is there is a 'freedom' with the Xeloda....an emotional and psychological impact, if you want to call it that of NOT having the pump, of NOT having to have every person at the grocery store, church, etc. realize that you are on chemo. For me, that pump was just another outward sign (and I felt that people stared) that I was battling this disease.

One big drawback to Xeloda is the dosing and you need to be aware of that. The dosing generally is two weeks on/one week off which can become annoying to say the least, at least for me around day 10 or 11.

There also is an issue (my onc as well as other's on this board who've had oncs tell them this) about the monetary aspect of this. 5FU is relatively cheap - in the range of $25 or less a treatment but take a look at a bill and you'll see that's not what you're being billed for. Xeloda, on the other hand, is filled at the pharmacy and has no monetary benefit for the onc or his/her clinic. Sorry to say that it's true....wish it weren't and I'm not saying that your particular onc has that 'motive' but you should know that some of us have been informed of that by our oncs (and btw - my onc was really clear that this exact topic has been discussed at their conventions/conferences...sad though).

You're going to have to make your choice and decide for yourself what treatment you wish to pursue. Either way, you'll be getting quality treatment.<<

Betsy

diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
6 cycles Xeloda + Avastin,
NED (PET every 3 mo)
Currently on Avastin only

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

Thanks for all the info, Betsy... there was a lot there that I will just tuck away in my memory bank and hope the chemo doesn't lose the memory bank ;)

One thing you mentioned, that I don't think I've heard from my onc or anyone is the bit about Folic Acid. You say there might be a problem with it and the 5FU or the Xeloda... but what problem do you mean? Would that cause more side affects, or lessen the success of the chemo?

Currently, I am on Xeloda. I am on Round 3 and I have to admit, I am one of those people who have had horrid pain from it on the bottoms of my feet (no problem with the hands). I'm not sure if this is part of the hand/foot syndrome or something different. 3 years ago, I was on FOLFOX and tolerated that well, except for the oxy. The Oxy did incredible nerve damage and neuropathy in my legs/feet from the knees down. The feet got the worst of the nerve damage (I guess more noticeable because of the necessity of the feet to walk), but if I forget to take my nerve damage meds (Lyrica... prior to that, it was Gabapentin), then I'm in for a very rough night of sleeping ;). Anywho... the Xeloda has attacked the bottom of my heels, that coincidently happen to be where there is sufficient nerve damage from the Oxy.

Round 1 was such intense pain! I was on the standard 14 days on Xeloda, 7 days off. I started feeling the pain in my feet on Day 2. My oncologist was surprised and wondering if something else might be causing the pain since it usually takes much more than 24 hours for the Xeloda to cause symptoms. But the pain started and got increasingly worse. Definitely nerve pain because even the combo of Tylenol 3s with Codiene and Oxycodone did not take the edge of the pain. By Day 10 I was in tears and walking really became an issue, even in the apartment. By Day 14 I was sure that if this was what I had to go through for 5 more rounds, I was beginning to understand why people would give up all treatments... enough is enough. So, my onc said this would not do, we would reduce the dosage from 1650mg twice/day to 1500mg twice/day and instead of doing 14 days straight, we would reduce that to chemo on Mon-Fri, no chemo on Sat-Sun, then chemo Mon-Fri, with a 9-day break. Round 2 went MUCH better, but we both questioned if that was enough chemo? There's no point taking the toxin if you aren't getting a benefit from it! So Round 3 (which I'm on now), we are back to 1650mg twice/day with a break on the weekend. Sure enough, Day 1 of Round 3, I took my 1650mg in the morning and by 4pm I could feel the pain coming back. Monday night this week, my sleep was horrible... I was in so much pain in my feet.

But then, I got to thinking (and trust me, I am NOT a doctor, nor do I play one on TV), I am taking 75mg of Lyrica twice/day to mask the nerve damage pain that the oxy caused 3 years ago. If the Xeloda is aggravating the already existing damaged nerves, or causing more intense pain because the damaged nerves are there, why not try upp'ing the dose of Lyrica to combat the nerve pain? Lyrica, in itself, is not a pain killer... it is a med that tells the brain that pain you recognize is not a pain you need to be concerned with. It's just nerve endings... ignore it.

So, I asked my onc if it would be safe to up the Lyrica dose without being dangerous or affecting the chemo... and she said that it's worth a shot. So she recommended that I double my dose. So, I now take 150mg in the morning and 150mg in the evening. Lo and behold.. I am NOT in any agony whatsoever. Oh sure, while walking I KNOW my feet are very sensitive and chances are that funny feeling I feel is actually intense pain, but the Lyrica is doing the trick and has gotten the brain to ignore it. It's actually amazing how that drug works! But the fact it is working right now and I can tolerate the Xeloda, I am a happy camper! If it remains like this where I am very much aware I'm in pain but my brain is not reading the pain as pain.. then I can definitely complete the last three rounds of Xeloda and not have to go back on the 5FU pump :)

Cheryl

Betsydoglover's picture
Betsydoglover
Posts: 1256
Joined: Jul 2005

Cheryl - one thing I meant to say regarding the info I posted is that I think the poster whom I quoted is a little overboard about folic acid. She's right - it can potentially make side effects worse (doesn't at all lessen the effectiveness). But, according to my onc, a normal multivitamin plus a normal amount of bread/pasta should be no problem. Probably don't want to supplement with extra mega-vitamin B supplements as they generally include large amounts of folic acid.

Betsy

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

Ahhh... thanks for the explanation, Betsy. I do take a multi-vitamin as well as an extra B6. B6 is suppose to help relieve/alleviate neuropathy, so between the multi-vitamin and B6 pill, I get 100mg of B6/day. I will check with my onc on the next visit if she thinks this might be a problem, but I don't think it is right now.

Today, I am feeling FABULOUS! My feet don't even hurt a little bit. The increase in the Lyrica seems to be doing wonders! Yayayaya!

Cheryl

pecosbil's picture
pecosbil
Posts: 1
Joined: Mar 2011

Thanks for the information about Folic Acid, Betsy. Thank God for the internet!!! The doctor recommeded B-Complex for my mom's diet and I took the best product to her. She lives in Peru and I live in California. I just found out that the B-Complex that I bought in USA has 400 folic acid. Poor Mom, maybe that is why she is having such a hard time with the hand-foot syndrome.I will call her tomorrow!!!

Pecosbil

patsy1954's picture
patsy1954
Posts: 85
Joined: Sep 2009

It all boils down to the fact that our cancer's are all different and how we individually react is different. I had the 5 FU pump with Folfox, was put on Xeloda after Folfox and it did not work for me. Within 3 months my C-T showed "considerable increase in tumor bulk". I was then out on Folfiri, so back on the pump. Guess what, that didn't work either, my numbers started climbing. I am now on Erbitux and CPT-11, waiting for another scan at the end of the month. I had minimal side effects on Xeloda, and really no big side effects on the Folfiri either. No cut and dry answer because we are all different.

Pat

tanstaafl's picture
tanstaafl
Posts: 1299
Joined: Oct 2010

On chemo, folic acid is substantially more toxic than leucovorin for up to half the population. Folic acid is cheap, stable and well absorbed. Unfortunately, part of it gets involved in an extra pathway that has no benefit for chemo and is also toxic for about half the population on chemo. The other, "good" pathway involves the same chemistry as leucovorin.

There are multivitamins and B-complex supplements with folinic acid (leucovorin), unfortunately higher priced. We actually use total leucovorin replacement (bye, bye folate enriched flour products and ordinary multivitamin/B complex supplements) because of previous toxicity with folate, and wanting to maximize the thymidilate synthase inhibitor value of leucovorin.

Leucovorin is less stable, so we baby it on climate control. The chemo goes much better now.

dorookie
Posts: 1736
Joined: Jul 2007

I prefer Xeloda, less side effect for ME, I had both and the IV 5FU didnt work so well for me, but since the Xeloda I have been cancer free for 2.5 years and I pray it continues...

Good Luck

HUGS
Beth

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Interesting seeing this thread that was originally posted back in August. I just reread my reply from August stating how much I hated the 5FU pump & how I was willing to put up with a little hand and foot syndrome to have the freedom of taking Xeloda pills vs. having the pump. Well... it's now fast forwarded a few months & I have been switched by my onc (and with me agreeing) from Xeloda back to the 5FU pump (I am also on Gemzar and Avastin in addition to the Xeloda or 5FU). My hand/foot syndrome got so bad that I was really, really suffering. My hands were raw and constantly cracked and my fingertips peeled so many times that I was losing my feeling in them. I was using all types of creams and prescriptions, as well as taking alpha lipoic acid, L-glutamine, and numerous other supplements. So... as much as I proclaimed I hated the pump before, I'm back on it again. And, I'm doing okay on it. It's nice to no longer have the hand/foot problems. I've had two chemo sessions with it so far. The first time, i had no side effects. This past time, I did get several sores inside my mouth and inside my nose. So, I guess you have to choose your poison, quite literally actually! For now, I think this is the way to go for me.

Interesting how perspective can change over time and with different experiences.

Lisa

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

Aww... sorry you had to do that, but like you say.... it is interesting how one's perspective can change over time and possibly even have a different experience. It sounds like you were really having an uncomfortable time with the hand and foot syndrome. When I was on Xeloda, I didn't have any problems with my hands... but my feet! Yikes! I had both heels peel off in two big sheets of skin. The pain I had in the heels was not on the surface skin but deep inside... to the point I couldn't walk on my feet even from the bedroom to the bathroom. Once again, my onc had to reduce my dose because it was so bad... but alas, it seems the reduced dose was not enough, hence the Xeloda stopped working for me.

I loved the convenience of the pill vs the infusion (and certainly the pump)... but couldn't handle the pain in the heels... or obviously the dose that I needed.

So, that is why I'm now on the Irinotecan. She didn't put me on the 5FU because I had such back neuropathy and nerve damage with it. She says the Irinotecan is as strong and powerful as Oxy, but without the side affects of neuropathy or hand/foot syndrome. Ha! It's true... that hasn't been bothering me... but oy vey, does it every do a number on one's tummy/intestinal tract :)

Pick your poisons is right :D

Cheryl

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