Had progression to spine and hips after 6 months of Ibrance and Letrozole. Got 2nd opinion on what to try next @ Mayo Clinic in Rochester, MN. Will be starting Xeloda next. Am encouraged that this may work for awhile for me. We are going to start with a lower dose and titrate up to limit side effects & find proper dose for me. Feeling hopeful. 🙂❤ Bev
Xeloda : Had progression to spine and... - SHARE Metastatic ...
Xeloda
Hi BevI started Xeloda November 2020 and struggled with sore feet and tips of fingers so my dose was reduced to 2000 mg a day one week off and one week on
That sorted the hand foot syndrome...however I’m beginning to feel nauseous a lot and not eating much so now I’m taking an antiemetic which has helped enormously
I think just getting the dose to suit is very important and do moan if you feel unwell
I’m curious to know what dose you’re starting on...I was given the highest dose for my body surface area but it was too harsh and the way your oncologist is prescribing seems much more sensible to me
Good luck
Barb xx
I see my local Oncologist Friday. I will let you know my dose. I have a 2nd opinion Oncologist @ Mayo Clinic in Rochester, MN. She suggested starting slow & titrating up to find my "sweet spot" with the new medication. I am really sensitive to medication, so it seems like a good idea to me. Good luck to you! I am hoping for good results. 👍🙂❤ Bev
Hi Barbara good to hear your side effects are getting under control. I’m on 1300 xeloda twice per day with very few side effects but my tumour markers are creeping back up. I take it 2 weeks on one week off. Did your oncologist clarify why you are one week on one week off? I’m wondering if this would be a better option for me.
Hi thereShe just changed dose and frequency at the same time...I assume it gives your body time to recover after one week’on’...tbh I don’t think it makes a difference as I felt horrid during my week’off’as well
I spoke to her on Tuesday and she won’t reduce the dose but has prescribed a different antiemetic as the one I was taking causes awful constipation which I can do without...my markers had dropped a small amount but she seemed disappointed as expected a larger decrease...that upset me a bit as I was quite pleased they’d dropped at all
Whole things a nightmare
Barb
Xx
Hi Bev. I started Xeloda in October. Tried 1000 mg daily no week off. Tumor markers continued to rise but at a lower rate so onc adjusted dose to 1500 mg daily still with no week off. Tumor markers dropped 30%. I hope they continue to drop. I prefer starting low and increasing dosage as the side effects are not bad and very bearable. Wish you a long run on Xeloda. Maria
Good luck with Xeloda, lots of ladies here seem to do very well on it. Hope you are one of them.Jackie x
Hi, I have just completed 1 week of XelodaWas put on because bone Mets went liver.
Affinitor exestamane reduced my bone Mets though. I’m waiting and seeing have moisturized hands and feet. I’m on 2 week on 1 week with 3000. Glad to have the break because I feel side effects coming e.g.
Slight swelling, more mucuos build up, and fatigue. I hope my body adjusts a little to it and markers come down too early.
Bev,
Sending positive thoughts for you!
Best,
Colleen
I love Xeloda! I hope it is as kind to you as it’s been to me....tumors shrinking, tumor markers slowly declining, and just a little diarrhea (easily controlled with Imodium) and numb cracked finger tips...I have the best energy I’ve had in a long time too. Good luck!
I need to start by saying that I'm allergic to multiple drugs and quite a few other drugs have been tried that just don't work for me. I learned I was allergic to letrozole. And the Ibrance I was taking with it at the time only did the opposite - tumors grew and spread! I was switched to capecitabine - the full dose of 10 pills/day. While it shrank the tumors, it still wasn't good for me at that dose; I had multiple severe reactions to it that put me in the hospital for 9 days. Dose was reduced to 6 pills/day, which did nothing. Now on 8 pills/day, and I'm unsure as to whether it's working or not. No side effects, but lots of pain around the main tumors. Doc may switch me to a weekly IV treatment soon. I can't remember what drug it is.
Hoping they get this all sorted for you soon! Take Care~
Hi Bev— happy for your 2nd opinion at Mayo. Sounds like a good plan to get going with Xeloda! Hope is a good thing— and I wish you the best with the new treatment!
I was reading this article in canceractive on Xeloda and they mentioned that turmeric helped. I’ll attach the link in case you’re interested:Chris
canceractive.com/article/ca...
the link for the turmeric article has changed..... it is here... canceractive.com/article/cu...
Hello Corgi3
Great you are able to get a second opinion from Mayo Clinic.
I am on my third cycle of Xeloda. Started at 3000mg a day (2 first cycles) but hand and foot syndrome was really bad so 3rd cycle is at 2000mg a day. Liver is back to his “normal” size and CA-15 has dropped by 50% after 2 cycles.
So far side effects wise it has been fine except for the hand/foot syndrome.
Best of luck !
Helen
Helen,I am now on a clinical trial, I had more progression on my May 5th PET Scan in my spine & hips. So am on my 3rd line of treatment in 1 year.
I hope that it works a long time for you. Very encouraging news about you liver & CA-15.
Take care~
Bev