Xeloda VS 5-FU

[horizon]

Just to add my 2 cents, I did Xeloda both during radiation and with Oxi. I had zero side effects with it. Either you'll get it or you won't, there's no way to tell. The pump has it's side effects too. Look at the pros and cons, and decide for yourself. There are many discussions on this board about the differences.

This is a good point and also your doctor can adjust your dosage for side effects. I had the amount of Xeloda lowered when I started getting mild hand foot.

[ktwmn]

PeterG: I will send PM.

[PeterG]

Looking for grounded, experienced opinions: My oncologist has proposed that I get a pump, and that I change from Xeloda with Avastin to 5-FU with Avastin plus Irinotecan, and that I get a port and a pump. This will take me from a three-week cycle to a two week cycle, but there has been some tumor growth in one lung met since prioor CT scan (3.6X 2.3 to 3.8 x 2.5 cm.) other nodules stable and no further spread (no new tumors in chest or abdomen.)
Since last posting, I have had another 7 or eight three-week cycles of Xeloda with Avastin. Side effects have been limited to hand-foot--some deep cracks in thumbs and painful guitar playing-- and some digestive malaise (not nausea, but gas and occasional diarrhea) and infrequent bouts with fatigue, generally relieved if I forced myself to exercise.
The prospect of a pump and port disturbs me to the point that it may cause folks to be aware that I have this disease--I have no desire to disclose it, unless necessary, and fear possible professional risk if I do. Also, I like the two-week as opposed to three-week cycle.

I am on a week off, while deciding. Onc. seems to think the vastin to 5-FU with Avastin plus Irinotecan stands a better chance of reducing size (or at least maintaining status quo ante) of tumors and keeping side effects to a minimum. I see this as being a potential quality-of-life inhibitor (pump to haul around and more frequent visits to oncology ward.) I need to make a decision this week, I believe. So, I am hoping for solid feedback as soon as possible.

Thanks,

Peter

[recruiter]

Peter, I've done them both. I'm on Xeloda and Avastin right now, and my tumor is shrinking significantly and the lung things are remaining quite small - a better response than the infusion 5 FU.

I've had my moments with Xeloda and Avastin - I get a serious diarrhea attack on Thursday night after a Tuesday Avastin infusion, like clockwork. I initially had some hand and feet cracking when I started Xeloda, but that has entirely abated. My reward has been, after a couple of years, the elimination of pain and the feeling that I'm sitting on an inflamed golf ball - I have rectal cancer.

In addition to a better response on the pills and Avastin, I was extremely self-conscious about the pump. I hated it. So I feel pretty good about the way things are going right now.

[PeterG]

Thanks Recruiter. I am tolerating the Xeloda with Avastin relatively well. And I have no primary tumor, or recurrence (to date.) It's all in my lungs--six or seven nodules. But one seems to be growing, and the onc., who I trust, thinks it is time to add a drug--oxaliplatin or Irinotecan--and he thinks the pump is the way to go. Not so happy with the prospect of severe diarrhea, but he says this does not always occur, and there are other drugs used to control it both in advance, and when and if it occurs. The problem with oxaliplatin , given my frustration with hand-foot from Xeloda (screwed up guitar fingers)--suggests to him that I will do better with a port, pump and Folfiri with Avastin. I continue to be extremely healthy--able to work out, ride bicycles for long distances, etc. I am concerned that the pump will interfere with this, and with work; but mostly I am concerned that the pump and port will put my condition on display. Not that I am ashamed; but I just do not want to have to deal with people I do not choose to share my cancer with knowing I have this condition. While improper to discriminate, the effects may well cause difficulties on many levels, including my ability to earn a living, which can easily impact my insurance coverage. Not a fight I want to have voluntarily, even if it is ethically valid.

[Soccermom2boys]

Hi Peter--

I did FOLFOX so my reply is regarding the pump, not the actual meds. I can absolutely appreciate not wanting to share your diagnosis with the world and wanting to be as discreet with your treatments--I too felt the same way. I just was not a pill person so I knew I could never do the Xelox treatments, I had a few tough times with the Xeloda during chemorad. Anyway, I am writing to say that I was fortunate and inquired prior to starting my chemo to ask if I could have the small ball pump for my treatments. You walk out of the center with a ball the size of a tennis ball which is very easy to hide with clothing and pockets--I am a high school teacher and my students had zero clue. Insurance is the key here, you have to see if they will cover it. I believe I recall a nurse telling me that Medicare wouldn't cover the ball pump. Fortunately I have great insurance (Cigna) and they were wonderful with all that I have needed so far, no complaints.

I do have a port and am hoping with another clean scan come June I will be de-ported this summer! I agree in that it doesn't make it easy to hide the fact you are/have dealt with cancer when you have that bump under your skin. It has given me absolutely no issues (except soreness when first implanted), but it also tethers me to the cancer center for a port flush every 4-6 weeks. It bothers me mentally way more than physically, but after a cancer diagnosis what doesn't, right?!

I hope you are able to avoid a port and yet still get the most out of your treatments! Good luck and keep us posted on what happens.

[ktwmn]

Peter,

I think your onc may want you to have a port because it will make the irinotecan infusion easier. Apparently irinotecan and oxaliplatin are really hard on the veins. That being said, I had a difficult time with the port the second time around, it stopped having blood return, and after a year i was having shortness of breath and neck pain. A port study revealed that it had migrated to the azygos vein and I had to have it removed. But that is unusual.

I found the pump cumbersome to carry around, but my insurance only covers the rectangular one that looks like 1980s electronics. As the previous poster said, see if your insurance covers the tennis ball size model.

[PeterG]

Soccermom2boys--thanks for the advice re: tennis-ball-size pump. Forwarded it to the onc. just now.

[PeterG]

Thanks ktwmn. Sorry about your struggles with the port--sort of scares me and I am sorry you struggled with it. Doesn't sound like fun.

[ktwmn]

Peter,

I didn't mean to scare you about the port, that is not usual and I think it had to do with placement by the surgeon. My first port in 2011 was problem-free.

[horizon]

I continue to be extremely healthy--able to work out, ride bicycles for long distances, etc. I am concerned that the pump will interfere with this, and with work; but mostly I am concerned that the pump and port will put my condition on display. Not that I am ashamed; but I just do not want to have to deal with people I do not choose to share my cancer with knowing I have this condition. While improper to discriminate, the effects may well cause difficulties on many levels, including my ability to earn a living, which can easily impact my insurance coverage. Not a fight I want to have voluntarily, even if it is ethically valid.

Just a little info. I had the port and no pump (Xeloda + Oxi). As far as the port goes it barely interfered with me working out. I was hesitant to get a port for many reasons but I have to say I have zero regrets about getting one. In the gym it wasn't a big deal at all. I was still doing things like pullups, dumbbell benching, etc. I shied away from certain exercises like dumbbell pullovers but it was more because of a mental thing about how it would be stretching it. I wouldn't want to do front squats and have the bar bump it. My doctor just told me to use common sense.

I'm not sure how it would work the days you have the pump.

[PeterG]

Just a little info. I had the port and no pump (Xeloda + Oxi). As far as the port goes it barely interfered with me working out. I was hesitant to get a port for many reasons but I have to say I have zero regrets about getting one. In the gym it wasn't a big deal at all. I was still doing things like pullups, dumbbell benching, etc. I shied away from certain exercises like dumbbell pullovers but it was more because of a mental thing about how it would be stretching it. I wouldn't want to do front squats and have the bar bump it. My doctor just told me to use common sense.

I'm not sure how it would work the days you have the pump.

Thanks Horizon--Yeah, aside from the hassle of having it put in, and the saline flushing tethering me to the hospital, the port is not my main concern. The pump, however,does not seem like something I want to put up with. Will though--didn't particularly care for the resection, or the colonoscopies, or any of this curse. But I, like most of us here, have learned to adopt. Just trying to avoid being defined by my illness--which to some feels like hiding it out of shame; I do not see it that way. Not ashamed, just hate explaining, answering ignorant questions, and undeserved and unwanted pity.

[ktwmn]

Not ashamed, just hate explaining, answering ignorant questions, and undeserved and unwanted pity.

I totally understand. People who know that I have this (many of whom were told by someone else) don't know what to say how to address "it". It is difficult to expend energy making others feel better. I often have to tell people that I don't talk about cancer with anyone except my doctors.

[Soccermom2boys]

People who know that I have this (many of whom were told by someone else) don't know what to say how to address "it". It is difficult to expend energy making others feel better. I often have to tell people that I don't talk about cancer with anyone except my doctors.

Exactly--so frustrating to be the one dealing with the mental and physical stress of having cancer, but yet having to make others feel better at your own expense. That's what I love about this board--everyone here gets it!

Just trying to avoid being defined by my illness--which to some feels like hiding it out of shame; I do not see it that way. Not ashamed, just hate explaining, answering ignorant questions, and undeserved and unwanted pity.

Yes, yes, yes--I had the exact same sentiments, but could never get my mother to understand. Argh! I also was tired of being called brave--as if I signed up for this shit?! I just wanted people to treat me like they always did and it seems that's nearly impossible if they know you have cancer. Crossing my fingers you are able to get the small ball pump if you have to go the pump route. Let us know what you hear.

[PeterG]

I also was tired of being called brave--as if I signed up for this shit?

Yep--well, there are choices, I guess. I mean, one can rake the back of one's hand across the forehead, make anguished and agonized moaning noises, and ask everyone one knows for advice and solace. But I think most of us want to just get on with our lives with as little disruption by this damned condition as possible for as long as possible. So, yep, good to have this community when there is concrete stuff to bat around. Still haven't heard back on the ball pump, but I am waiting for onc. to get back to me on a trial (https://clinicaltrials.gov/ct2/show/stu ... ocs=Y#locn) --seems they are testing Nivolumab in combination with Daratumumab on non-MSI-High CRC patients; don't know enough about it, except we non-MSI-High folks have not been deemed treatable with checkpoint inhibitors for the most part, until now. If that happens, treatment will be very different. Still won't want to discuss it with most of my acquaintances, though.