Nov 5, 2021 06:10PM serendipity09 wrote:

Nature - thank you! Keep us posted. Many others have found they had minimal SE's. I had such a hard time on it exactly a year ago. My MO promised that at the first sign of any intolerable SE(s) she will take me off. She is giving me a lower dosage than what I started on last year and will remain on that, so I'm hoping that it will be a different experience so I can get through the eight cycles. I'm glad I was able to heal from rads, she wanted me to start the weeks after I had my last session, when she saw my skin she "Nope, see you in three weeks."

Nov 6, 2021 08:27AM serendipity09 wrote:

Blue - thank you for posting! I didn't get the hand/foot last year, but preparing for it, just in case. I completely understand the brain fog. I still have it and again my last chemo infusion was in August 20 and my last dose of X was Dec. 31 2020. Some days are better than others, yesterday was a bad day, couldn't concentrate on anything and could barely hold a conversation. It's very frustrating. I wonder if this is something I'll have forever. Then of course there's the thought, way in the back my my head, if it could be the beginning of something else, my father has Alzheimer's and so there's that.

I've come across many others who are on X, but they are Stage IV, and have not heard of others taking it for maintenance, so it's nice to know there are other's out. Why I started to thread, in hopes of finding others as I had o success last year.

Have a great day!

Nov 6, 2021 03:55PM - edited Nov 16, 2021 07:25AM by serendipity09

NorCalS - thanks for sharing. You're not the first that has said that SE's, in your case headaches, got better towards the end. I will have to make sure to put my best foot forward and tolerate any SE(s) that present themself/selves. I really want to throw everything at this beast and avoid another recurrence.

Nov 7, 2021 10:00AM serendipity09 wrote:

Mamacure - I'm glad I started the thread as I felt clueless and really needed insight, not to mention support from others going through the same thing.The members of the Stage IV thread were very nice, but someone made did make sure to point out that it was, indeed, a Stage IV group and so I stopped asking. I get it.

So many that I've spoken to here and from what I've read in the past on the Xeloda thread for Stage IV, it's very been very tolerable and others go on and adjust very well. My MO was very surprised by my SE's

When I was on X last year and experienced the SE's that I did; bone pain was the worst, I could barely walk, but again, that was me. I had just finished my ACT & carbo about two months prior. I'm praying that the extreme SE's I experienced were due to residual SE's from that.

I did not experience hand and foot, but began using Aquaphor every night a week before starting X (doing it now too.) I tried to walk, but was very weak, again had a lot of pain in my feet, but no skin reactions other than a little redness on my palms. from the SE's.

I struggle with constipation too and X did not change that for me.

I was nauseous, but nothing that Compazine or Ondansetron couldn't help with. I did lose my appetite, but I made sure to force myself to eat.

I start on Tuesday or Wednesday, depending on if MO will allow me to do just one dose on Tuesday. I hoping that this time around it is different. I will keep you all posted.

Nov 8, 2021 06:24PM serendipity09 wrote:

Thank you Mamacure! I really appreciate it. Its been an emotional day trying to get myself emotionally prepared!

I am all healed up, thank God!

Have a great night!