Will Start Xeloda Soon: Hi. I have msb... - SHARE Metastatic ...

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Will Start Xeloda Soon

macspow profile image
28 Replies

Hi. I have msb which is in my bones and small spots on my liver (PIK3CA mutation).

I'm searching Xeloda and reading past stories from members here. When Ibrance, Fulvestrant, Xgeva stopped working after 6 mos. of treatment, next were 6 weekly (3 on / 1 off) treatments of Taxol 150 mg which I learned today isn’t working. Next up is Xeloda. I am avoiding Piqray as long as I can. Are there any opinions or experiences on what to expect w/ Xeloda? I tolerated the past treatments pretty well.

Thanks, Jim

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28 Replies
Iwasborntodothis profile image
Iwasborntodothis

I posted quite a bit on this drug and had a good year with it. Please check them out.

macspow profile image
macspow in reply toIwasborntodothis

Thanks, I will check all I can find under your name.

Lmurray52210 profile image
Lmurray52210

please be sure your oncologist orders a DPD test prior to starting Xeloda. If you are unfamiliar you can learn more at test4dpd.org

macspow profile image
macspow in reply toLmurray52210

Thank you

13plus profile image
13plus in reply toLmurray52210

This is excellent information to know!! Thank you! I know Xeloda is on the list of potential future drugs for me to try

PJBinMI profile image
PJBinMI

I've just been on Xeloda a few cycles--dose had to be lowered plus switched from two weeks on one week off scedule ti one week on one week off. My hands became bright pin, tender and had a few skin splits. I found cheap white cotton gloves on line--amazon, I think. My onc preribed some ointment that has helped some and I grease my fingers up with it and pot on the gloves every night before bed. Initial results of scans showed improvement--about time to do those again. I hope you do well without the sore hands!

macspow profile image
macspow in reply toPJBinMI

Thank you

Lisapion77 profile image
Lisapion77

Hi, in response to your question about Xeloda, the only side effect I feel is fatigue. I take 2500 MG one week on/one week off and that seems to work. I have not had any of the HFS (hand/foot syndrome), which is good. I eat food prior to taking Xeloda and it has not been harsh on my stomach. Also drink a lot of fluids while on it. This will help.

macspow profile image
macspow in reply toLisapion77

Thanks. I'll start 1500 mg 2x daily in a few days. I'm wondering thinking about the12 hr. apart w/ food. My routine is an early breakfast and late lunch/dinner - about 6-8 hours apart. Thanks again, Jim

Lisapion77 profile image
Lisapion77 in reply tomacspow

Hi Jim, I know my doctor had mentioned to take the pills 12 hours apart, and I really should of asked why. At any rate, I usually do intermittent fasting, but the week that I am on the Xeloda, I will just have a small amount of yogurt right before I take the pills and it doesn't seem to upset my stomach eating very little. I hope this helps.

macspow profile image
macspow in reply toLisapion77

Good morning. Yes that helps. I'll be talking to my onc again, but it's good to know I don't need a whole meal before taking the pills.

doulos21 profile image
doulos21 in reply toLisapion77

I too, prefer intermittent fasting, but food every 12 hrs with med negates that. Food necessary with med to slow down absorption, to have higher absorp

tion rate and less side effects. Reason for every 12 hrs is that the half-life of the med is 45 min., meaning half of the dose is depleted after 45 min, then half of that remaining portion in another 45 min....etc.....complete depletion is achieved by 11.5-12 hrs at 3000mg/day....had not done math on other doses. since I can't do intermittent fasting with this med for the 2wks on, I sometimes will skip a day (shhhh...don't tell😁) to do a 24hr fast...or more usually, will do a 3day water only fast on an off week. Found that is helping raise my immune response. info on that here: drjockers.com/category/heal...

Lisapion77 profile image
Lisapion77 in reply todoulos21

Thank you for your feedback! I found it to be very helpful. How well do you tolerate 3 day water fasting? I tried that one time and my sugar levels dropped so low it made me feel faint. And believe me, I completely believe in water fasting as a way to help your bodies immune response, etc. I also like the idea of skipping a day to regroup your body. What type of cancer do you have-if you don’t mind me asking?

macspow profile image
macspow in reply toLisapion77

I wasn't very clear, my routine is 6-8 hrs. between breakfast and dinner. I don't eat much at all in the evening. Thanks

Antares12 profile image
Antares12

I've been experiencing extreme tiredness. I also am battling anemia. I go in for a blood transfusion tomorrow.

macspow profile image
macspow in reply toAntares12

Thank you

Lisapion77 profile image
Lisapion77 in reply toAntares12

Yes, I have been experiencing extreme fatigue as well. Trying to explain this to my 10 year old daughter is exhausting because she doesn't understand why I need to nap often. lol. I hope everything works out for your blood work!

Antares12 profile image
Antares12 in reply toLisapion77

Thank you. They just had me do a walking test, so I'm very tired right now.

ba5083 profile image
ba5083

Curious if you have looked into any dietary supplements that might assist in blocking the PI3K/Akt/mTOR pathway(s)? From my understanding upregulation of the PI3K/Akt/mTOR is an important mechanism for developing resistance to CDK 4/6 inhibitor drugs so blocking this pathway is import when using these drugs. If you are interested in discussing more feel free to message me. I don't want to fill up this thread if not interested.

Lisapion77 profile image
Lisapion77 in reply toba5083

In response to your message, I take several dietary supplements, but had gotten some of my information from Jane McClelland's book "How to Starve Cancer and kill it with Ferroptosis", and also, working with an Integrative Oncologist who also had recommendations as well to block the pathways.

macspow profile image
macspow in reply toLisapion77

Interesting - Thank you

DianaSav profile image
DianaSav in reply toba5083

I’m curious about this! I am on Verzenio now but tested positive for pika mutation! I may be switching due to a possibility of progression

Eliactida1955 profile image
Eliactida1955

I’ve been on it a month and so far it’s been the easiest but let’s see. Hand to foot syndrome and diarrhea but so far nothing but it’s too soon I guess. I wish you the best starting it. Further on I’ll have more answers for you🙏✝️

macspow profile image
macspow in reply toEliactida1955

Thank you. I'll start in a few days. I'll be interested in hearing how you're doing on it.

Eliactida1955 profile image
Eliactida1955 in reply tomacspow

so far it’s been ok no side effects as stated but only been on it a month. It might take longer for me to tell you.

macspow profile image
macspow in reply toEliactida1955

Thanks. I've only been on it a few days. My onc said any side effects would come after 3 weeks.

MyMiracle13 profile image
MyMiracle13

I had been on Xeloda for almost 2 years with hardly any side effects. After it stopped working, I took Afinitor and Aromasin. That didn’t work too so am now on Piqray. So far diarrhea is my side effect.

macspow profile image
macspow in reply toMyMiracle13

Thank you. I may be on Piqray one day, although I have been avoiding the option. I'll be interested to know how you are coping w/ it as you go.

Thanks again, Jim

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