My first line of treatment for bone only MBC was Kisqali and Letrozole for almost two years. I was NED for much of that time but then had mets to the peritoneal area. Started cape in Nov of 2020 at 4000 mg per day, 2 weeks on then a week off. That was way too much for my body as I had extreme fatigue and nausea. After about a month the cape was reduced to 2000 mg per day, I was better as far as the fatigue but the extreme nausea remained. At the end of March 2021 I was hospitalized for 4 days with a colon blockage which my oncologist attributed mostly to the capecitabine.
My markers had been reducing dramatically so he wanted me to stay on the cape but reduced it to 1000 mg M-F and none on the weekend. I just got the results of a PET/CT scan this week and it showed no active cancer at this time and my CA-15 is in the 60s and had been around 750 last October.
If I had not read about metronomic dosing on here I would have been way more apprehensive about it. Right now it is working for me and cape at this level is very tolerable.
Just wanted to share because as we know tomorrow can be a different story!
My best to all of you,
Audrey
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Thrifty51
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Thank you for this! My doc appointment is this afternoon and I am going to request 7 days in and 7 off because I am still full dose and 8 or 9 rounds in and the cumulative effects are getting me down. But my CA 15’s are still coming down so I can’t complain too much.
I understand as the cumulative effects can be daunting. There was a time span in there that I went almost 20 days without any cape because of the colon blockage and the medication I had to take so I was really worried but seems as it was okay.
Doc had an interest take - he said “stop you multi-vitamin first and see if side effects improve.” He feels that folate can aggravate the side effects. He wants me to try this first before reducing dose or changing schedule.
very interesting! Let me know what you discover trying this. Taxol causes neuropathy, so I am careful to take a good quality B complex and an extra B6. Now I am wondering.
cancermind.com/folic-acid-c... so my multi vitamin had 160% daily requirement and I eat a bunch of foods (broccoli etc) that are high in this nutrient so his advice plus this article make some sense
I should have been more specific as it was a partial colon blockage. Strange as I was not constipated and my symptoms were no different from the nausea problems I had been having with cape but more pronounced with extreme stomach cramps and throwing up a lot. Also, I had a temp and a very fast heart beat.
This great to hear. I have hit the end of the road with Ibrance and not sure what next course will be. I have been on it for 4 1/2 years. I had heard, but had no evidence, that once you received chemo and went back on Ibrance that it would quit working once you started on it again. That seems to be what happened to me. It will be interesting to see where this goes. My tumor markers do not indicate tumors so i just received a scan. I hope to know tomorrow. I had a good run on Ibrance so i can't complain. Anyone else that has had to stop Ibrance, i would love to know what your next treatment was.Thank you again Audrey for the info.
Ibrance became noneffective for me after 11 months. I was put on Piqray. I had horrible side effects with it and day 10 was in the ER with anaphylactic shock with rash head to toe front and back and swollen lips. Then I was put on Xeloda 6-15-21 and seem to be tolerating it fairly well. I did have the peeling of skin on hands and feet immediately, it seems to have calmed down now. Since I've been on Xeloda, my CA 15.3 went up one month and my CA 27.29 went down. The next two months they switched, CA 15.3 went down and CA 27.29 went up. This last test yesterday, same thing one up and one down. I really do not understand why this is happening or what it means. Anyone have a clue. /my Dr says she will discuss it at my next appointment in 3 weeks.
Hi AudreyGlad to hear you are at last having less nasty side effects.
Your post is really helpful, and one I will remember for when I need it.
I had similar issues with the 4000mg a day dose I started on. I am now down to 2000mg a day. 14 days on 7 days off. However I am trying the weekends off in the two weeks to see if I can extend the time I can take it for in the first 14 days (only managing 10 days in last round). Are you still taking 7 days off in your new regimen? .
What a great post. I believe most of our drugs work at lower doses and select schedules. Thus lessening the side effects. One example is Tamoxifen. A study has been done that shows it is effective at 5mgs. per day as opposed to the normal dosage of 20mgs. But there are more.
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Tamoxifen 
METs and Ibrance
