Switching to Xeloda, what to expect?

[Vana3]

Hi!
I am switching to Xeloda and Avastin regime and nervous about it. Can you tell me your experience with it? side effects? I was hoping my hair will grow back!?
We are prepping for potential Liver surgery. I have a scan in 8 weeks as long at is continues to show stability we will move forward with surgery. Is Xeloda just as good as 5FU? We have had good response from FOLfox (although Oxi was stopped after 8 treatments due to side effects)
Anything anyone can share, I would be grateful.

[claudine]

My husband did Xeloda + Oxaliplatin, I'm not sure I can tease apart the side effects - he suffered big time from oxi though, probably not so much from Xeloda. And he did not lose his hair at all on this regimen, so hopefully yours will grow back!

[Brearmstrong]

Hi Vana, our stories seem very similar! I was put on Xeloda in May 2018 to present. I had lost all my hair from folfiri and it grew back since May. It grew in slower than normal but it’s now past my shoulders. Hand foot syndrome was brutal for me but lower dose has been much more manageable. Best of luck.

Brenda

[Vana3]

Thank you both for sharing your experiences.

Brenda I was pretty relieved to hear your hair grew back. I know it’s vain of me but I just want my hair back. I feel like I am doing my best dealing with everything else but my hair....sigh..
I started the Xeloda 3 days ago and am just feeling off but realize it’s going to take a cycle two or three to see what side effects are going to pop up. With the 5FU pump it was a bit different every week but similar enough that I knew what to expect and how to handle.

Claudine, I just finished Oxi and also suffered from some big side effects so I know how he felt! I think the Oxi caused me the hair loss though

[claudine]

I sure hope you are not suffering too much from peripheral neuropathy, that's really nasty stuff...
Hair loss is a weird thing. My husband didn't lose a single hair in Xelox but a lot on Folfiri, especially at first. Then it stopped... So he still has a full head of hair, at least enough that for a man his age, nobody notices anything, especially people who didn't know him before. His beard is rather ragged now though (not a problem for women!).
Good luck with the treatment XXXXX

[JJH]

...Anything anyone can share, I would be grateful.

Prevention of hand foot syndrome under Xeloda
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=61932&p=490294#p490294
https://www.oncologynurseadvisor.com/home/departments/ce-courses/prevention-and-management-of-hand-foot-syndromes/

[DocSavage]

I am currently on Xeloda/Avastin. It is much easier than the FOLFOX that is for sure.

For me they started the dose high - 4x500mg twice a day for a week and then an off week. It took about 3 cycles for the hand and foot syndrome (I like to call it hoof and mouth) to get so bad they reduced the dose to 3x500mg twice a day. After about three more cycles they reduced it again to 3x500 in the am and 2x500 in the pm. I was getting a bit of queasiness every so often bit a zofran always took care of it. Had a bit of the 'dire rear' usually on the Saturday after but again not as bad as FOLFOX. I have tried every cream and unguent on the planet to help with the hand and foot - but really the only way to combat it is to reduce the dose. My fingerprints disappeared - can't use the them to open my computer or phone and have to use my eyes for CLEAR at the airport. Thinking about a life of crime.

The Avastin is very easy, at least for me. I have a port and it only takes about 30 minutes to run it in. The only real thing that I notice is it makes my nose run like a faucet. Took to carrying a bandanna in my pocket so as not to snot on everything.

I didn't lose my hair on FOLFOX but it did thin pretty bad - and turned snow white! After I finished it turned back to salt and pepper (distinguished grey) and got a bit thicker - but I am at that age where it's never going to be the flowing locks I used to have.

I have noticed on this new regime that my hair and beard grow slower but I haven't noticed any more thinning...

The good news is that I had a complete metabolic response - there is no activity on PET after six months and its hard to find the lesions on MRI. So it can happen! I am having laparoscopic ablation on Monday and the surgeon said he will rummage around in there but if he can't find anything to zap he will just zip me back up.

That's about it.
Good luck and remember - the only bad day was yesterday

-Andy

[Vana3]

Thank you Andy!
I’ve been on it for a week now. My doc has me doing 2 weeks of 3x 500 mg in the morning and evening, then one week off... so a 3 week cycle. I definitely am getting queasy here and there but overall still too early in it to know. When you talked about your finger tips I looked at mine and was very surprised to see how smooth they are, where did my fingerprints go?!?? That’s crazy! I was also encouraged to hear that your hair came back! My fingers are crossed, I have a lot of fuzzy going on so we will see!

My nose is also a faucet so that must be the Avastin which I’ve been on since October. I always have a pocket full of tissues.... This past week the infusion was just 30minutes like you said and it was very nice to go home without the pump! I have a one year old crazy toddler and I could hold her and do stuff!

Now I wait and see how this goes long term. I am moisturizing hands and feet and hoping for the best.

I am wishing you a very successful laparoscopic procedure. I am hopefully doing the same in 12 weeks as long as things look good.
It’s hard to think about doing it all but like you said “the bad day was yesterday” every day is a new day yah?
Sending good thoughts your way....