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Hello, and Thanks To You All For the Information

Capox Dude's picture
Capox Dude
Posts: 31
Joined: May 2019

I had my 10 year (OK, 12) colonoscopy, and when I woke up, the Dr. peeked around the curtain and said "Well Mr. Capox Dude, sometimes we have to deliver bad news..."

So anyway, after surgery (large tumor in cecum removed in lap colectomy) they came back with III B and three lymph nodes positive.   I had a good surgeon, and after being sent home on Thursday I was mowing grass on Sunday...walking behind a self propelled mover, because I'm dumb, but not stupid. Cool

So after researching a bit, I asked my oncologist in the first visit if I could have Capeox instead of Folfox, as I'd read the IDEA study and wanted to quit after 3 months if I could hack Capeox.   My oncologist said she almost never gives her patients Capox, as "American demographic does not do well on that, and we find Folfox more tolerable."  I asked if I could give it a go, as the increased neuropathy and other issues that increase in the 3 to 6 month period was something I'd like to miss. Also, my T3N1 would work as well at 3 months as 6.   I guess I am worried about the neuropathy from Ox.  Plus, I also thought the extra week of rest might be helpful in the Capox regime,  as I still need to work.

My doc was wonderful, and said that it was not an illogical choice, and if taking the pills was too hard to handle, I had a port, so they would just swap to the Folfox and pump when I said I could not handle it.  She also said that it was not uncommon to lower the Xolenda dose - but there were limits on efficacy, and that I needed to finish one or the other.  

My first infusion was this Monday, and I felt a little tingle in my fingers that went away by the end of the infusion.  But I sure have that jaw/bite pain thing, and the throat closing feelilng if I drink anything cold.   No nausea or diarrhea yet.  

So my question is this: my assumption is that it is better not to have symptoms early, as it implies that the side effects will not be as bad (over the regime when it is cummulative) if the symptoms you suffer are later than sooner.  But is that your experience?  

Do my instant cold reaction side effects mean I am in for Hell over the next three months vis-a-vie someone who did not feel the effects of Ox until much later?

Is my lack of nausea 36 hours after starting Xolenda a false hope, or the remains of the anti-nausea drug in the initial Ox infusion session?  

I guess I wondered what your experience is/was like - early issues, late issues, no issues, or some combo.   Lastly, thanks for all of the helfpful advice I found before I signed up. It is appreciated.

 

 

ron50's picture
ron50
Posts: 1721
Joined: Nov 2001

     Sorry you need to be here but nice to meet you. Iwas stage 3c into six nodes. I was diagnosed over 21 years ago. I had a very old regime of chemo cosisting of bags of 5Fu via canula in the back of the hand bolsterred ever two weeks by 9 tablets of levamisole (3 a day for three days after the 5fu). This regime is no longer used. Levamisole was banned around 2001 for sometimes fatal side effects. I was not supposed to cause neuropathy but i have suffered severe neuropathy in both feet , legs and left hand. I was 48 at dx , i'm now 69. I have had no recurrence. I still work 4 days a week and fish out of a four metre kayak. I have had no recurrence of the cancer but make sure I have regular scopes. Good luck for a full recovery. Ron.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Sorry but already having the response to the Folfox isn't a good sign. I think it usually takes a few treatments for it to start up and it is cumulative. But I've heard of some people getting something to go along with it that helps, not sure what or how much of a help it is. I tried things like drinking a cold drink while getting the IV of Folfox. Nothing helped.

Jan

SandiaBuddy's picture
SandiaBuddy
Posts: 892
Joined: Apr 2017

I, too, was a 3b, 3 lymph nodes involved.  I agreed to CAPOX, but I did so badly with the first oxilaplatin infusion, I quit it.  I did four months of capecitabine.  In the end it caused heart problems that I am still dealing with till this day (I see a cardiologist tomorrow).  If I had to do it all over again, I would skip the chemo entirely.  It was only supposed to give me a 10% improvement in survival.

With that said, the doses of the oxilaplatin can be manipulated.  If you get too many side effects, you can negotiate with the doctor to reduce the dose.

Some people sail through chemo with no problem, and some suffer permanent damage.  It is hard to predict in advance.

Good luck to you on your path through this disease.

Annabelle41415's picture
Annabelle41415
Posts: 6212
Joined: Feb 2009

Everyone's experience with sickness, numbness, fatigue, etc. is different with each individual.  My real concern with numbness that didn't go away happened after infusion 4 of the oxi and after telling the doctor and asking her to reduce it she didn't and now I'm confronted daily with permanent neuropathy.  It is cummulative so make sure you make your doctor aware of anything that you feel you can't handle.  I'm sorry that you are here.  First bite syndrome is common and might continue even after treatment.  Hope you continue to ask for help on the board, we are a great bunch of people.  Wishing you well.

Kim

Capox Dude's picture
Capox Dude
Posts: 31
Joined: May 2019

Thanks for the replies.  Annabelle, infusion 4??  If you did Folfox, that was - what - the 8th week? Wow.  That was very soon, wasn't it? Sorry you are dealing with that.  

Sandia, I have to look at the numbers.  I thought a 3b with 3 nodes had a coin flip without chemo.  If so, my chemo is about a 25-20% better shot.  

Jan, you have the heart of a lion, with all of your issues.  You all do.  I will just keep pluggin' along until I can't take it.     so many brave folks have put up with far worse, so I will try not to be a speical snowflake, and keep up with y'all. 

Ron, glad you are still here and the bane of large fish.   Threw up today for the first time.  I'm sure that the CapeOx Diet will have me in weight loss in time for 2020 swimsuit season.   But I hope to bail on chemo after three months, no matter the possible slight increase in going three more.

Take care all.

 

 

 

Annabelle41415's picture
Annabelle41415
Posts: 6212
Joined: Feb 2009

Actually the treatment symptoms are cummulative so when you get to more treatments will you feel it longer in between.  I'm sorry to hear you got sick and you should ask the doctor for something to help combat that.  Make your doctor aware of everything as that is what they are there for to help you get through this and if something just doesn't feel right - speak up.  Hope you feel better tomorrow.

Kim

SandiaBuddy's picture
SandiaBuddy
Posts: 892
Joined: Apr 2017

Everyone is different.  This might be worth a look: https://csn.cancer.org/node/318670

Capox Dude's picture
Capox Dude
Posts: 31
Joined: May 2019

The Ox symptoms are now gone (jaw pain, throat stricture, lips numb if cold drinks sipped) and I have not had diarrhea or vomiting since day three of the pills. I'm a little more tired though in the afternoon at work. Looking forward to the week off from pills and then seeing how the next Ox infusion goes. I get that its commulative, and I know that it takes longer to recover each time after infusion.   My onc told me Monday that this might be a far worse week than the first one as the Xeloda symptoms start to kick in, but so far it has gotten better overall.  Fingers crossed. 

What was y'alls experience on the off weeks?  Did you get a reprieve at all where you could tell you felt better?

Annabelle41415's picture
Annabelle41415
Posts: 6212
Joined: Feb 2009

Most people start to feel better the week that they are off.   You will gain some, if not all, of your energy back before your next treatment, however that too can sometimes get shorter in between treatments the more you have.  Its a wonderful feeling the days you don't have treatment though so enjoy it. 

Kim

Capox Dude's picture
Capox Dude
Posts: 31
Joined: May 2019

Oh my!  Whelp.  This is a different experience.  Everything I read about, side effect wise, is now being experienced (although not strong Grade 2 or 3 yet).  Man, the cold makes my fingers burn!  Ah well, onward and all that.  Y'all are my role models.

Trubrit's picture
Trubrit
Posts: 4851
Joined: Jan 2013

I remember the first infusion. I did have the tightness in my throat and the cold sensation in my hands, but I thought 'This is doable'. And then the second infusion, well, that changed things, and it wasn't quite so easy after all.

But, you will make it through to the end, and when you get those NED results, you will know it was worth it. 

Just keep an eye on the neuropathy. Jump on it, as soon as you start feeling numbness - different to the cold/burning sensation. I left mine too late, before talking to the Oncologist, and now it is permanent. 

We're all beside you. Onward and upward. 

Tru

Twinzma
Posts: 212
Joined: Jan 2018

As I recall my husband had the cold sensitivity after the very first infusion too. He was on it for about 8 infusions but there was growth in the mets so the switched to Folfri. He did very well with all the other drugs in the mix, he never got sick was just very tired. His hair thinned and his appetite actually increased. And he has no permanent nephropathy. In December 1 year later they switched him to the pills so he could start the Y-90 to treat the mets. On Valentines day was his second round and since then, it has been very hard on him. He is telling me he has lost only 11 pounds, frankly I think it's way more and he has developed ulcers. We were all certain is was the y-90 but despite all the meds they are not healing. I am beginning to wonder could the chemo pills be contributing to that.... I hope that you are one of the lucky ones that chemo doesn't make you sick. Just know it is possible! 

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