Xelox experiences

[horizon]

those were the reasons our oncologist gave for trying it without a port...with only 4-5 infusions he thinks its not worth the risks of the procedures to place it and remove it. We trust him so we will see...I am glad you had an tolerable experience...thanks for the heating pad tip - I will check to see if they have a microwave at the infusion center!

I've read several people who did the infusions without a port and were fine. For me it did not go well at all and I ended up with a port. Here's the thread I made about it:

viewtopic.php?f=1&t=24924

[LeonW]

. . . microwaveable heating pad to wrap around my arm during infusion . . .

My hospital did that every time. Reason, they said, is to open up veins / improve bloodflow

But it really wasn't that bad . . . right choice for me.

x 2

[cmewrrie]

. . . microwaveable heating pad to wrap around my arm during infusion . . .

My hospital did that every time. Reason, they said, is to open up veins / improve bloodflow

But it really wasn't that bad . . . right choice for me.

x 2

this is encouraging, thank you. We are prepared to insist on a port if its just too bad, but these tips and positive stories keep me hopeful it will be fine for the 4-5 times needed in our case.

[Nik Colon]

I have really horrible veins so I could never do the arm, most the time with an iv they end up in my hand and that's not all that pleasant and I'm not afraid of needles. I personally love my port and can use it in the er too I have had absolutely no probs except a couple times not getting blood right away but did after moving around, but today was the only time I had to get the meds to clear it. Go figure, on my last tx. Anyway, I'm keeping it for awhile

[kellywin]

Very helpful. thank you all.

He will not be having a port (unless the first infusion turns out to be unbearable) so hopefully that won't be an issue but, good tip on placement in case we do end up with one.

I plan to go to every infusion and do the driving whether he likes it or not lol, but good to know he may be back and able to drive a few days after.

My experiences were similar to everyone else I think. For me it was like the worst hangover ever. The first one was fairly easy, but I think it was because of all the steroids, which made me want to jump out of my skin, so my Onc cut them down, after that I just generally felt like shit. I had no port, all IV, some sucked, some didn't, not enough to make me want to stop or get a port. I echo the comment about a heating pad or make sure they use hot damp towels wrapped in bags. I drove myself to all of them and home. I didn't want people with me, just sitting there staring at me. I'm sure your post above is coming from the right place, but don't insist on being there if he doesn't want you to. Tell him you'd like to be there for him, but also let him know that if he just wants you on standby - that's fine too. If my husband forced himself on my chemo sessions he would have gone home in a body bag. For me, I did feel pretty shakey right after chemo, so I really needed to eat, sometimes I'd stop and get myself something, other times, my sister or mom would pick me up something and meet me at home.

Good luck to your husband!

[cmewrrie]

Very helpful. thank you all.

He will not be having a port (unless the first infusion turns out to be unbearable) so hopefully that won't be an issue but, good tip on placement in case we do end up with one.

I plan to go to every infusion and do the driving whether he likes it or not lol, but good to know he may be back and able to drive a few days after.

My experiences were similar to everyone else I think. For me it was like the worst hangover ever. The first one was fairly easy, but I think it was because of all the steroids, which made me want to jump out of my skin, so my Onc cut them down, after that I just generally felt like shit. I had no port, all IV, some sucked, some didn't, not enough to make me want to stop or get a port. I echo the comment about a heating pad or make sure they use hot damp towels wrapped in bags. I drove myself to all of them and home. I didn't want people with me, just sitting there staring at me. I'm sure your post above is coming from the right place, but don't insist on being there if he doesn't want you to. Tell him you'd like to be there for him, but also let him know that if he just wants you on standby - that's fine too. If my husband forced himself on my chemo sessions he would have gone home in a body bag. For me, I did feel pretty shakey right after chemo, so I really needed to eat, sometimes I'd stop and get myself something, other times, my sister or mom would pick me up something and meet me at home.

Good luck to your husband!

thank you so much for this important insight...sometimes I guess I get so carried away trying to do everything I can think of to help I don't stop to think he may not find it helpful I will be there to drive, but will definitely ask him if he prefers me to step out for any or all of the infusion

[JudeD59]

I don't have any experience to share, but I'm glad you asked this question so I could have some insights before I start in a few weeks (once the open incision finishes healing). I'll be doing Folfox, but the oxi side effects are the same for both.

Even though the coughing, struggling for breath, having trouble talking side effects terrify me, it's good to know that it happens so I don't freak out (as much) if it happens to me. I haven't see onc yet so I don't know my exact treatment, but all along they have been saying I'll have a port and receive 4 months of Folfox, once every two weeks. We'll see if that changes. My hope is that since they got such a good response from the pre-surgery Xeloda, I won't have to have as much oxi or at least fewer sessions with it. I want to do whatever I need to do to beat this, but if they can do that without filling me with oxi, that would be great.

Judy

[Nik Colon]

I don't have any experience to share, but I'm glad you asked this question so I could have some insights before I start in a few weeks (once the open incision finishes healing). I'll be doing Folfox, but the oxi side effects are the same for both.

Even though the coughing, struggling for breath, having trouble talking side effects terrify me, it's good to know that it happens so I don't freak out (as much) if it happens to me. I haven't see onc yet so I don't know my exact treatment, but all along they have been saying I'll have a port and receive 4 months of Folfox, once every two weeks. We'll see if that changes. My hope is that since they got such a good response from the pre-surgery Xeloda, I won't have to have as much oxi or at least fewer sessions with it. I want to do whatever I need to do to beat this, but if they can do that without filling me with oxi, that would be great.

Judy

I wanted to add to some of my symptoms, the one I had strep so I'm sure it made it worse, also, I have anxiety but it was a different feeling so wasn't so much anxious as just more like I slowed down, hence the breathing and speech. Try not to let it scare you as you may not have that, but if it happens, remain calm and it should go away shortly, if any scare you too much or you fear them hitting, you could stay there for an hour or 2 after as mine hit always right after on the way home, but everyone is different

[JudeD59]

I don't have any experience to share, but I'm glad you asked this question so I could have some insights before I start in a few weeks (once the open incision finishes healing). I'll be doing Folfox, but the oxi side effects are the same for both.

Even though the coughing, struggling for breath, having trouble talking side effects terrify me, it's good to know that it happens so I don't freak out (as much) if it happens to me. I haven't see onc yet so I don't know my exact treatment, but all along they have been saying I'll have a port and receive 4 months of Folfox, once every two weeks. We'll see if that changes. My hope is that since they got such a good response from the pre-surgery Xeloda, I won't have to have as much oxi or at least fewer sessions with it. I want to do whatever I need to do to beat this, but if they can do that without filling me with oxi, that would be great.

Judy

I wanted to add to some of my symptoms, the one I had strep so I'm sure it made it worse, also, I have anxiety but it was a different feeling so wasn't so much anxious as just more like I slowed down, hence the breathing and speech. Try not to let it scare you as you may not have that, but if it happens, remain calm and it should go away shortly, if any scare you too much or you fear them hitting, you could stay there for an hour or 2 after as mine hit always right after on the way home, but everyone is different

Thanks, Nik!

Judy

[Nik Colon]

I don't have any experience to share, but I'm glad you asked this question so I could have some insights before I start in a few weeks (once the open incision finishes healing). I'll be doing Folfox, but the oxi side effects are the same for both.

Even though the coughing, struggling for breath, having trouble talking side effects terrify me, it's good to know that it happens so I don't freak out (as much) if it happens to me. I haven't see onc yet so I don't know my exact treatment, but all along they have been saying I'll have a port and receive 4 months of Folfox, once every two weeks. We'll see if that changes. My hope is that since they got such a good response from the pre-surgery Xeloda, I won't have to have as much oxi or at least fewer sessions with it. I want to do whatever I need to do to beat this, but if they can do that without filling me with oxi, that would be great.

Judy

I wanted to add to some of my symptoms, the one I had strep so I'm sure it made it worse, also, I have anxiety but it was a different feeling so wasn't so much anxious as just more like I slowed down, hence the breathing and speech. Try not to let it scare you as you may not have that, but if it happens, remain calm and it should go away shortly, if any scare you too much or you fear them hitting, you could stay there for an hour or 2 after as mine hit always right after on the way home, but everyone is different

Thanks, Nik!

Judy

Yw

[Jacques]

...I've found that being prepared with what to expect can go a long way towards coping...
Thanks!

I don't have much new to add except for the following: They usually run the first infusion more slowly than the other 4. That's so that they can observe the patient more closely for possible adverse reactions the first time around. Starting on cycle 2 the infusions will be at full speed (i.e., they take a shorter time to complete, but are possibly more toxic at the moment because a more concentrated dose of oxaliplatin is being infused per minute). If the oxaliplatin turns out to be too much to handle, they can reduce the dose on subsequent cycles. They have several fall-back dose-reduction levels. You might want to discuss with your oncologist the possibility of running the later infusions at reduced dose instead of at full dose. You might even want to drop oxaliplatin altogether after the third or fourth cycle. Someone already mentioned breathing problems. You may want to discuss with your doctor some contingency plans if you develop severe breathing problems while you are back at home after the infusion. Also, since patients sometimes sleep 18-24 hours at a time, someone needs to be there to remind them to take their pills every 12 hours.
http://www.gene.com/download/pdf/xeloda_ppi.pdf

[kellywin]

I'll echo the timing thing - the first one takes forever. The subsequent ones still take up to 4 hours, the Oxi drip alone for me was set to 2 hours and since it's in the vein, they may have to slow it down, and you have to have pre-meds first and bloodwork, so it's a process.

One thing I wanted to add (note that I didn't re-read all the responses - so this may have been mentioned). I highly recommend taking your anti-nausea pills whether you think you need to or not. Once nausea sets in, it's hard to get in front of. I took my Zofran as prescribed even if I didn't feel technically nauseous. I don't' know if this made a difference or not, but I never got really sick or puked, as I said earlier, I felt like I had a horrid hangover, but I never had bad nausea.

Also, keep some things in the house that are room temp like: bottled water (try a few brands because I found water tasted like shit, for some reason Figi was the most tolerable), also, have some crackers, it was all I could stomach for a couple of days sometimes. Have a variety of food, somethings just won't taste good and you'll find that so many things are in the fridge, and that's not going to work, so buy some foods that can be room temp.

[cmewrrie]

Having a very tough night. Tell me it gets better . I feel so useless. How long til the steroids wear off and he can have a shot at sleep? Is day 2 better or worse than day 1?

I've read and read and thought we were prepared but it seems he is getting every single side effect.

[Nik Colon]

The first 2 days were the best for me for energy, but hard to sleep, by the 3rd I crashed. Usually sleeping up to 24 hours.

[cathy123]

I never got steroids. I am not sure if your husband needs them for some reason, otherwise maybe ask to cut them next time especially if he is unable to sleep.

Without them each day got a little better, but I understand the steroids have a delayed action as they wear off.