Capox (Xelox) as Adjuvant for RC stage 3b

[mtipte]

Hello supporters! My mum will start post surgery chemo for RC Stage 3 b . It'll be Capox (Xelox), any tips? I read neuropathy sucks and the doctor said sometimes it's irreversible, do you agree? Her onc tends to be really pessimistic (the same happened with neoadj but no major side effects thanks God).

I do need your help friends. My mum is nervous. 6 rounds of Oxaliplatin + 2500 mg Capecitabina (xeloda) daily for two weeks and 1 week off. Any past experiences? Thanksssssss

[Lee]

I did not take the pills, butt rather was hooked up to a pump for 48 hrs, butt did get the Oxaliplatin.

I always got an egg & cheese breakfast sandwich on way to infusion. Keeping food in stomach, helps keep nausea at bay. Thus several small meals vs 3 meals a day. Don't worry about eating healthy while on chemo. Even junk food is better than no food in stomach.

Drink lots of liquids a day or two prior to infusion. She does not want to get dehydrated, as that could land her in the ER.

Only eat/drink food/liquid that sounds/feels good. If she forces something down, she could develop aversion to it. I'm grateful to my chemo nurse who noticed I was getting an aversion to water. Told me to stop drinking it until all finished with chemo, love it today. Once I ate a Boca burger. Forced it down, will never touch one again.

Ginger helps with nausea. Ginger snaps, Ginger ale, etc.

Be sure to tell Onc of side effects. They can be accumulative and many times, the Dr can prescribe something to help ease the side effect.

On the week off, plan one day with something fun to do. No Dr appts, one day to feel normal vs being a cancer patient. This sure helped me, especially as I got further into the chemo. It was one day to look forward to, to feel normal, especially on those days I was recovering from chemo.

Hope this helps, really it's not that bad if she stays on top of it.

Lee

[mtipte]

I did not take the pills, butt rather was hooked up to a pump for 48 hrs, butt did get the Oxaliplatin.

I always got an egg & cheese breakfast sandwich on way to infusion. Keeping food in stomach, helps keep nausea at bay. Thus several small meals vs 3 meals a day. Don't worry about eating healthy while on chemo. Even junk food is better than no food in stomach.

Drink lots of liquids a day or two prior to infusion. She does not want to get dehydrated, as that could land her in the ER.

Only eat/drink food/liquid that sounds/feels good. If she forces something down, she could develop aversion to it. I'm grateful to my chemo nurse who noticed I was getting an aversion to water. Told me to stop drinking it until all finished with chemo, love it today. Once I ate a Boca burger. Forced it down, will never touch one again.

Ginger helps with nausea. Ginger snaps, Ginger ale, etc.

Be sure to tell Onc of side effects. They can be accumulative and many times, the Dr can prescribe something to help ease the side effect.

On the week off, plan one day with something fun to do. No Dr appts, one day to feel normal vs being a cancer patient. This sure helped me, especially as I got further into the chemo. It was one day to look forward to, to feel normal, especially on those days I was recovering from chemo.

Hope this helps, really it's not that bad if she stays on top of it.

Lee

Thanks Lee.

Just a question. Did you take any B6 or B12 vitamin to help with neuropathy? Any other tips to deal with side effects?

[Lee]

Hi Mario,

Please understand, when I got this chemo, it was still experimental and officially only available to stage IV people (I was stage III). My Onc was able to get me on board with a trial group. I was her first and only patient to get it at that time. A lot of changes and recommendations have been made since then. My Onc had to fight my Insurance company to get a port put in, they were new and expensive then. I got my first infusion in my hand.

No I was not allow to take any B6 or B12 or any vitamin pills while on chemo. I was allow to drink Ensure, and that was about it. Any problems I would report to my Onc and she would decide from there.

For me, neuropathy was not such an issue in my hands or feet. (remember I was hooked up to a pump (5fu), did not take the pills), butt do have it in my ears today. It is consider one of the rarer side effects to occur in the ears. One ear is 50% hearing loss due to "nerve damage". By the time I took my last infusion, I had pretty much lost most of my hearing in both ears. I would get most of it back with in a few weeks finishing chemo, butt over the next 5 years, I had gradual hearing loss due to nerve damage. The range of my hearing loss is the exact opposite of someone who losses hearing due to old age. Thus I have to protect my hearing today. Anyway the good new, the gradual hearing lost stopped about the 5 year mark. I don't wear hearing aids, butt many time, I do have to turn my head in a direction that allows my good ear to hear what people are saying.

. . . Any other tips to deal with side effects?

Yes, keep oven mitts near freezer, cold things (including cold drinks) hurt a lot worse when going through chemo.

While on chemo, keep easy prepared meals in frig. Many days it was a struggle to get off sofa, put something from freezer to microwave to the kitchen table.

While they did not advice this then (if anything I was told the exact opposite), exercise can be helpful while on chemo. Once I told my Onc I was worried I did not get the full dose of chemo because the following day of disconnect I had energy. I was told not to overexert myself. I followed up with, if I did "overexert" myself, I had the best time of my life doing it. Looking back, I can see where exercise is a good thing. Again, many things have been learned since when I had this chemo.

Best advice, be aware of side effect and expect them to get worse with each infusion, thus important to keep Onc up to date.

Hope this helps. All the best to you and your mom.

Lee

[WriterGirl1969]

Hello supporters! My mum will start post surgery chemo for RC Stage 3 b . It'll be Capox (Xelox), any tips? I read neuropathy sucks and the doctor said sometimes it's irreversible, do you agree? Her onc tends to be really pessimistic (the same happened with neoadj but no major side effects thanks God).

I do need your help friends. My mum is nervous. 6 rounds of Oxaliplatin + 2500 mg Capecitabina (xeloda) daily for two weeks and 1 week off. Any past experiences? Thanksssssss

Hi mtipte. I see that Lee is already giving you excellent info and advice, so I'll pipe in only to supplement from the perspective of someone else who did the Xeloda in pill form. Mind you, I did not do it with the oxa due to the fact that I have pre-existing neuropathy already, so my oncologist didn't want to make that worse. From all my research and what I understand, neuropathy is a *fairly* common side-effect of the oxa. That is not to say it's a given. Some people don't get it at all. For others, it's temporary. For some, unfortunately, it is permanent. The important thing will be to monitor side effects and report them to the oncologist as they are experienced so that they can be mitigated or treated, or treatment adjusted.

As someone who was very similar in staging to your mother (see my signature details), I have done well so far on the adjuvent Xeloda monotherapy. So if your mum doesn't respond well to the oxa and they remove it, this won't negate the positive effects of the Xeloda on any stray cancer cells.

I hope this helps. Feel free to PM me any direct questions and I'll be glad to answer. I'll be on vacation the next week or so, but should be able to pop back on when we get home next weekend.

Hugs and Prayers,
Tracy

[mtipte]

Hello supporters! My mum will start post surgery chemo for RC Stage 3 b . It'll be Capox (Xelox), any tips? I read neuropathy sucks and the doctor said sometimes it's irreversible, do you agree? Her onc tends to be really pessimistic (the same happened with neoadj but no major side effects thanks God).

I do need your help friends. My mum is nervous. 6 rounds of Oxaliplatin + 2500 mg Capecitabina (xeloda) daily for two weeks and 1 week off. Any past experiences? Thanksssssss

Hi mtipte. I see that Lee is already giving you excellent info and advice, so I'll pipe in only to supplement from the perspective of someone else who did the Xeloda in pill form. Mind you, I did not do it with the oxa due to the fact that I have pre-existing neuropathy already, so my oncologist didn't want to make that worse. From all my research and what I understand, neuropathy is a *fairly* common side-effect of the oxa. That is not to say it's a given. Some people don't get it at all. For others, it's temporary. For some, unfortunately, it is permanent. The important thing will be to monitor side effects and report them to the oncologist as they are experienced so that they can be mitigated or treated, or treatment adjusted.

As someone who was very similar in staging to your mother (see my signature details), I have done well so far on the adjuvent Xeloda monotherapy. So if your mum doesn't respond well to the oxa and they remove it, this won't negate the positive effects of the Xeloda on any stray cancer cells.

I hope this helps. Feel free to PM me any direct questions and I'll be glad to answer. I'll be on vacation the next week or so, but should be able to pop back on when we get home next weekend.

Hugs and Prayers,
Tracy

Thanks Tracy,

I talked about this with her oncologist already and she mentioned that as there's lymphovascular and perineural invasion in the pathology report, the risk of recurrence is higher, thus the oxi is necessary. It's her first infusion and so far so good. Did you have LVI too? My mum tolerated well the pills so now the docs started at 80 % to see how it goes.

Thanks for your good vibes.

[WriterGirl1969]

Thanks Tracy,
I talked about this with her oncologist already and she mentioned that as there's lymphovascular and perineural invasion in the pathology report, the risk of recurrence is higher, thus the oxi is necessary. It's her first infusion and so far so good. Did you have LVI too? My mum tolerated well the pills so now the docs started at 80 % to see how it goes.
Thanks for your good vibes.

Hi.
No, I did the oral Xeloda (Capecitabine), so no infusion and no mix with any other drugs. I wanted to feel more "normal" taking pills vs. having to get drugs IV, and it was important for me to keep working during treatment, so the oral was the right choice for me. My studies (and I did a lot of them) revealed that the oral was just as, if not more effective than the IV version anyway, so it was clear to me that this was the way for me to go.

I'm actually kind of surprised that your oncologist said that the oxaliplatin was needed to reduce the risk of recurrence. It's my understanding based on what my doctors told me and from various medical studies that oxaliplatin doesn't necessarily add all that much to the effectiveness of treatment (effectiveness being to prevent recurrence). My oncologist said it "might add 5%," but studies question even that.

So that you know I'm not just pulling this info out of the air, I've copied a link below to a study from 2013 from the International Journal of Cancer Research and Treatment:
http://ar.iiarjournals.org/content/33/3/1053.long

It says (in part), "no survival benefit was evident with the addition of oxaliplatin to i.v. 5-FU/LV in treating patients with CRC in this practice."

They do go on to say that age may play a factor, and that patients under age 75 may respond better to oxa than those above, but they also say that "limited clinical evidence to support the administration of oxaliplatin in elderly patients is amplified by the concern of possible long-term neuropathy..."

Please understand - I am not suggesting that it won't help. It may. I just know that most of my doctors tried to gloss over information until I prodded them and they realized that I was not going to just accept things at face value, and that I'd done my homework. Anyway, something to keep in mind. I'm glad to hear your Mom did good on her first infusion. Hopefully that will keep going for her, and all of this will be a moot point.

Hugs and Prayers,
Tracy

[mtipte]

Thanks Tracy,
I talked about this with her oncologist already and she mentioned that as there's lymphovascular and perineural invasion in the pathology report, the risk of recurrence is higher, thus the oxi is necessary. It's her first infusion and so far so good. Did you have LVI too? My mum tolerated well the pills so now the docs started at 80 % to see how it goes.
Thanks for your good vibes.

Hi.
No, I did the oral Xeloda (Capecitabine), so no infusion and no mix with any other drugs. I wanted to feel more "normal" taking pills vs. having to get drugs IV, and it was important for me to keep working during treatment, so the oral was the right choice for me. My studies (and I did a lot of them) revealed that the oral was just as, if not more effective than the IV version anyway, so it was clear to me that this was the way for me to go.

I'm actually kind of surprised that your oncologist said that the oxaliplatin was needed to reduce the risk of recurrence. It's my understanding based on what my doctors told me and from various medical studies that oxaliplatin doesn't necessarily add all that much to the effectiveness of treatment (effectiveness being to prevent recurrence). My oncologist said it "might add 5%," but studies question even that.

So that you know I'm not just pulling this info out of the air, I've copied a link below to a study from 2013 from the International Journal of Cancer Research and Treatment:
http://ar.iiarjournals.org/content/33/3/1053.long

It says (in part), "no survival benefit was evident with the addition of oxaliplatin to i.v. 5-FU/LV in treating patients with CRC in this practice."

They do go on to say that age may play a factor, and that patients under age 75 may respond better to oxa than those above, but they also say that "limited clinical evidence to support the administration of oxaliplatin in elderly patients is amplified by the concern of possible long-term neuropathy..."

Please understand - I am not suggesting that it won't help. It may. I just know that most of my doctors tried to gloss over information until I prodded them and they realized that I was not going to just accept things at face value, and that I'd done my homework. Anyway, something to keep in mind. I'm glad to hear your Mom did good on her first infusion. Hopefully that will keep going for her, and all of this will be a moot point.

Hugs and Prayers,
Tracy

Thanks Tracy.

I remember I argued that oxi won't add more benefit and the onc said it was not accurate. Then I did a research and I came across different studies, there are controversial ones, but in the whole oxi seems to add more benefit.

Watch these videos (like from 2015/16)
https://www.youtube.com/watch?v=HhCMvrukbX8

https://www.youtube.com/watch?v=ujGJPGg8p78


,which summarised current and past research on that as adjuvant chemotherapy. My mum is not having the pump, but xeloda (pills) twice a day and just 2 hours infusion (oxi) at 80%.

I need to read more about this, I suppose she will take oxi until she stops resisting it or neuropathy gets worse.