Xeloda

[kearnan]

I am curious. I am now going to be put on this since it spread to my liver and her treatment of tamoxifen and afinitor did not work bc my scan last week showed it has continued to spread in my liver.

She mentioned I would be taking 8 pills per day broken down into four pills twice per day. And that I would be a week on this med and then a week off.

For those who do not mind, please let me know how it was prescribed for you. 8 pills a day seems excessive from what I have been reading. Just wondering how it was prescribed for others where their cancer spread to their liver and did it actually help at all?

I did not yet get the drug from the speciality pharmacy (and now after reading the side effects, I am not sure if I want to continue with treatment.) I am told 4-6 months if it does not work or if I decide not to continue with treatment.

Quite frankly, having this week without any heavy duty chemo drugs, makes me feel normal and good. I forgot how that feels. I think now that I have this week off, the thought of starting another drug, dealing with the side effects and it may not even work, thus I would be losing time I have.

[stardust1965]

This drug is called Capecitabine in the U.K. I am on ten tablets a day. Five in the morning and five in the evening. I am on a three week cycle of two on and one off treatment. It is working well for me without any side effects. It’s the best I have felt in a long while! The accompanying leaflet looks scary but, as with all these drugs, we all react differently to them. I hope that if you do decide to start this new treatment it works well for you too. In the U.K. the next line is usually IV chemotherapy which I want to avoid for as long as possible.

[kearnan in reply to stardust1965]

10 tablets???. She prescribed me 800 (500 mgs. each) four in am and four in pm. The first dose knocked me out. I was in bed within an hour after taking it and crying bc I thought no, I cant deal with this. Then when I got out of bed, I had severe pain in my arms and legs for about 1/2 hour. I did not take the second dose.

I am upset and scared. But always surprised that some women have no issues with certain meds and for others, it is bad. I am not willing to get a few more month (I am not into this five years) if I have to feel like that. I would rather stop treatment and just enjoy, as much as I can, the time I have left. But now every day, it is like I am making off a checkmark, one less day of life. For the first time since my diagnosis, I feel broken inside and scared.

[8576]

Most people tolerate Xeoda very well but I didn't. It didn't agree with me so I switched to Verzenio and Tamoxifen.

Cheers, June S.

[kearnan in reply to 8576]

I had been on verzenio, the lowest dose at 50 mg. per day plus falsodex injections. This was after I stopped taking it after a week when she prescribed it at 150 mg. and then 100 mg. It was that bad. I then was put on the lowest dose and injections and I had a great run at 3 and 1/2 years and I felt normal. No naps, nothing.

Then it was found in my liver in Feb. She did not change my treatment even then until I had my June CT scan and the cancer in my liver had progressed significantly. She THEN took me off the verzenio and injections and put me on 20 mg. of tamoxifen and 5 mg. of ainitor. I was on that for two months and I guess from the bloodwork they would tell it was not working. I said to her I do not want to waste time taking drugs that are not working. So she moved up my CT scan five weeks earlier and I had it on August 25th and the cancer tumors again grew rapidly and she stopped me on that.

Now, she has prescribed Xaledo at 4000 mgs. per day (4 500 mg. pill in the am, and 4 500 mgs. pills in the pm. I will be doing a week on and a week of. I am terrified of this medication. I had to force myself to eat something for breakfast bc for the past few hours, I never ate until lunch time.

I am not sure if I want to do this after reading (not just on this site) the side effects. I do not have kids, husband ,siblings, nieces or nephews, etc. so I do not have as much desire as some who have kids and grandkids.

I finally just took 4 of them at 12:00 pm today (EST) and I am already very agitated and upset. Not sure if I want to continue this or just stop the treatment now. I would rather have 4-6 months as she suggested I would have without treatment and feel normal than live another full year but being sick and tired and just staying in my apt. today.

After this this time, I think I finally broke mentally. I just do not know anymore.

[8576]

Try it. What do you have to lose? Maybe it will slow things down and be good for you. I didn't have liver mets. I have it in the lungs.

Cheers, June S.

[KMBL_]

I am on 3,000 milligrams per day with seven days on and seven off. It’s worked for me in bringing my tumor markers down by 200 points. If it is too much, they can reduce the dosage. My side effects have been minor hand and foot and fatigue.

[kearnan in reply to KMBL_]

I had started out on Ibrance at 150 mgs. with every fourth week off. I had never been sick before my diagnosis, nor have I ever event spent a night in a hospital. The first three days I thought okay this is not bad and then on the fourth day the fatigue hit. I never experienced fatigue like that. I could barely take a shower and had no energy.

I found it very hard to deal with so I was looking forward to my week off and OMG...that was the worse. I was in bed for almost a week, shivering and freezing and putting a towel between my teeth bc of the chattering. IT WAS ALSO HUMID AND AUGUST IN NYC and here I was shutting off the ac, feeling that the apt. was stuffy, but with pajamas, wool socks, wool robe and about three blankets. It was awful.

I told her I could not do this. It was like I had to accept that one week every month was gone for me. I never even knew (nor did she offer) to lower the dose.

I cried when I found out Verzenio and injections were no longer an option bc I had been them on for so long. Now, I am debating, anxious and wondering maybe it just time to stop treatment. I am in my fifth year now.

[KMBL_ in reply to kearnan]

I’m technically on my third year but nine years because six years were a missed diagnosis. Stopping treatment is such a personal choice. You have to do what’s right for you. I’m on my second line. I am not doing horribly on Xeloda. Hugs. Were you de novo when the cancer was found?

[kearnan in reply to KMBL_]

Yes, I was. It was found in my lungs. This is my fifth year. Ibrance was the first drug she put me on. I was never sick, always healthy so for the first like three days I thought this is not that bad.

Then the fatigue hit and I never experienced anything like that. Three weeks on and one week off. She never told me and I was so naive about cancer, I didn't know to ask any questions. The fatigue I found unbearable and bc I live alone, I still had to do my laundry, clean, go food shopping and I do not drive.

Then my week off came and I was so excited. Wrong. I was in bed for the entire week. It was August in NY and very very humid. I shut off my central air, put on wool socks, pjs and robe and got in my bed under several covers and put a towel between my teeth bc they were chattering. It was awful.

I lasted three months on that and each week off was horrible so much that I felt like a drug addict, that I wanted to take them before my week off was over. I was so so glad to get off that. She had me on 125 mg. and I had NO idea one could ask for a lower dose.

So odd how the same drugs affect us all differently. I am now 62, diagnosed at 57 but I am amazed that some people can tolerate the xeloda at all when my first dose today kicked the crap out of me and I thought, nope, not doing this. Even if I was promised it would slow down the cancer growth, being laid up and feeling this sick and just on one dose means it will only get worse.

You feel okay. Maybe because even with the other drugs I had been on, I was not tired, not fatigued, a little nauseous but that is about it. This one kicked my butt and only after my first dose. Not taking another dose this evening.

[KMBL_ in reply to kearnan]

I’m so sorry it was so tough for you. I would not do it if it made me feel like that either. There will be a point where I will say no. You have to do what you feel is best. I will live my last days with quality, not quantity. If you stop, please come back and let me know how you’re doing.

[LibraryGeek]

I have 8 tablets a day also but the strength depends on your own height and weight- it can be lowered if your side effects are bad. I am only on my second cycle but have not had anything too bad yet. The nurse told me it is generally well tolerated and can have amazing effects. I also have liver mets which developed in the last 18 months and which progressed on Faslodex/Ibrance, my lung and bone mets are still stable. I also think you should try it- you could have a great result and feel well on it, and you can always stop in the future if you don’t get on with it.

Good luck.

Jackie

[kearnan in reply to LibraryGeek]

I am short 5 feet, 3 inches and overweight which is why she prescribed 4,000 mgs. per day. It will be a week on and a week off. But you are right. The minute I start having bad side effects, then that is it. But I will give it a shot. But I think I may have overread a bit too much about the side effects, and I do not have the strength to go through that type of fatigue again and I live alone. But you are right, I can try and if it gets too bad, I will just stop.

Thank you.

[NPmary]

Kernan. I recently made decision on a second line of treatment. I know l will be faced with another decision in the near or slightly distant future.

What l do is gather as much information as l can from multiple sources including my physical, sites like this, drug manufacturer sites, Google scolarly articles on the drug and on specific items like side effects of the drug, stats on progression free survival and stats on overall survival. I take notes as necessary about what's important to me and questions l have. l take my questions to my physicians and ask her if my understanding about what l read is correct. Then l make my decision and l understand l can change my mind if l

decide to. Also dose is something to also talk about with your physician because if it's known from practice that the lowest dose of a med works as well as the highest dose (that docs usually want to start us on because that's the dose the drug company got their approval on) l might ask why don't we start on the lowest dose if l am willing to take the risk involved.

I know this is alot but it's our life and our dying, it's our side effects, our lifestyle, and our quality of living.

I wish you the best. ❤️

[kearnan in reply to NPmary]

I can tell it annoys her when I question something bc unlike, when first diagnosed, I knew nothing about breast cancer. Now, I feel I am so much more better equipped but she does not like it when I said I read something or like she told me Everolimus shrinks tumors in the liver. I had went to their website and it said in all caps and bold THAT IT DOES NOT SHRINK TUMORS, IT STOPS THE CANCER FROM SPREADING.

So when she told me yeah, it shrinks tumor I said then why would the manufacturers put in bold on their website that it does not shrink tumors. She looked caught off-guard and said well I have seen it. I said I just find it odd that the manufacturer of this drugs put that it does not, bc if it did, they could make more much money and sales and get more oncologists to prescribe it.

I think it bothered her that I looked it up.

[NPmary in reply to kearnan]

Sorry - we should never be made to feel bad about ourselves by our doc or that they are ill informed or just dont care how they talk to us! I know youre in the UK, l dont know if you have the chioice to get a second opinion or switch docs. Keep speaking up for yourself. ❤️

[kearnan in reply to NPmary]

No, I am not in the UK, but NYC. This would have been my fourth line of treatment so now the other choices will be just as harsh. I cried when I found out it spread to my liver and that I was going to be taken off the verzenio and falsodex injections. It was like I even forgot I had cancer. I was on 50 mg. of Verzenio and I had three and a half years on it. So to go from one extreme to another is difficult. It is pretty advanced at this point, it has increased in my lungs, it is in my spine (had radiation also) but the pain from that was awful but they referred me to palliative care. And then my liver in February of this year and the tumors are doubling in size and growing so quickly.

I told my palliative care doctor (who works at the same medical center) that at this point I believed my onco was trying to kill me LOL....I am only 1/2 kidding.

I said to her when the breast cancer was found in my liver in February of this year, why did you keep me on the verzenio and falsodex injections. She got very defensive and I knew I hit a sore spot with her. It was a completely new organ and I thought oncos change the treatment plan once it spreads to a different organ.

Bc then my CT scan in June showed rapid progression of the cancer in my liver (increased significantly (all bolded and in caps)). I should have found another onco about two years ago, but when my onco referred me to palliative care and my doctor, Dr. Egan, gave me those strong opiod meds I was able to walk again and was so excited to be out and about. Then two weeks later covid hit. SMH

My onco pooh poohed when I told her my back went from feeling normal to extreme pain. She just said well you are getting older, not everything has to be related to cancer and I just shut up. My next CT scan showed it was in my spine. So for about three months I barely left my apt. bc of how difficult it was for me to walk. I should have left then, but I didn't.

At this late stage of the game, I cannot imagine that any of the drugs will not be as harsh. I think I have felt so good for so long that I forgot how bad the meds can be. Thanks.

[NPmary in reply to kearnan]

l am so sorry forall you are going thru.

[Half-Full]

I could be wrong but I think Xeloda comes in different strength tablets so I’m not sure if the above comments which focus on number of pills are giving an accurate picture of dosages. My wife started Xeloda approx. 4 months ago. She’s on 2,000mg/day (2 500mg pills with breakfast and 2 500mg pills with dinner). She’s very petite (approx. 100lbs) so most folks are on higher doses, but as with most of these drugs, there are some studies that show that lower doses are better tolerated and almost as effective.

She’s done very well on Xeloda so far. She does have fatigue on some days, and she needs to use a lot of creams/oils for her hands and feet to prevent the hand foot syndrome symptoms. She is tolerating Xeloda as well as, if not better than, how she tolerated iBrance and Talzenna. It has dropped her tumor markers by 70%. Her MBC has spread to her lungs and she had been on supp O2 when she started Xeloda, she’s now been off the supp O2 for over 3 months.

The side effects of the targeted therapies were more debilitating for her than Xeloda has been, which was surprising and counterintuitive for us.

If you feel 8 pills a day (4,000mg?) is excessive I would not hesitate to speak to your oncologist about starting on a lower dose. Bring in some of the studies with you that have shown efficacy at lower doses. Quality of life considerations are too often not given enough weight with dosing these meds. It’s a tough thing to balance though as you also want to make sure your maximizing its effectiveness, but that doesn’t always translate to taking the max dose that you can tolerate.

I hope some of this helps with your decision, and if you do try I hope it works well for you.

[kearnan in reply to Half-Full]

Thank you. She is calling me today and she wants me to take 8 pills of that a day (300 mg.) every day for a week (split up between two times per day at 4 pills per day.) That seems excessive to me. But my cancer has spread in my liver and the last treatment I was on for only two months was tamoxifen and afinitor. And I had a scan which showed the cancer was still spreading so she stopped that treatment. After having a few days off from taking any chemo type meds, I feel good and the thought of the side effects I am reading about make me wonder if it is worth it.

[Half-Full in reply to kearnan]

Eight (8) 300mg pills a day is 2,400mg/day. Relatively speaking, most would probably consider that to be on the low end of the scale. That’s only slightly more than my very petite wife is taking (she’s on 2,000mg/day). There is a guideline based on body weight. So assuming you weigh more than ~120lbs, I would not say that 2,400mg/day is excessive.

Most are started on the more aggressive 2 weeks on and 1 week off protocol. My wife couldn’t tolerate that so she had to change to 1 week on and 1 week off. Since your oncologist is starting you on the easier to tolerate 1 week on/1 week off protocol, it sounds to me like it’s a very reasonable and well informed strategy that balances a good chance of success with a good chance of relatively minor side effects.

[kearnan in reply to Half-Full]

I was wrong. I thought it was 300 mg. but each pill was 500 mg. so 8 pills broken down into four pills twice a day. I asked why such a high dose bc I see the other ladies on the board (her face when I mention this board LOL) are on much lower doses. She said well I did it based on weight and height (yes, I am very overweight). I only took the first four today and it kicked my butt.

[goat2017]

I was on Ibrance and it worked for awhile. When it stopped I was put on xeloda ,6 pills a day. It is working great. My numbers kept going down and my last scan showed no cancer. I do have the hand side effect but as long as it's working. I can deal with side effects. Give it a chance. Good luck.

[kearnan in reply to goat2017]

How many mgs. were you put on a day and what week did you get off?

[debbiedo2063 in reply to kearnan]

Hi just to sayI had a conversation with oncologist today. Told her 4950mg per day was no good, fatigue , swelling of feet etc.

She is cutting me down next cycle to 4000 that is 4 x 500mg each am and pm.

Said if still bad side effects down to 3000 next cycle after that and not to worry as the pills are just as effective in a low dose but they start you based on body surface mass if you have no underlying conditions which I didn’t.

So here goes again. Worth a try

Debra xxx

[kearnan in reply to debbiedo2063]

OMG. I am waiting for my onco to call me at noon. I felt like her wanting to prescribe me 8 pills (at 300 mg.) a day to take two times a day with four pills each day was alot. I would be doing a week on and week off. I thought she was overprescribing too much.

Now it seems like a small amount compared to what you are prescribed. I do not blame you. I remember when she started me on Verzenio at 150 mgs. twice per day. I stopped it after two weeks bc of the diarrhea and fatigue. She then lowered me to 100 mg. twice a day and again I stopped it after two weeks bc of the diarrhea and fatigue.

She was getting a bit annoyed I think but then she said well the lowest I can prescribe is 50 mg. twice per day plus I was getting monthly falsodex injections.

I felt normal, no more naps, no diarrhea and I was on that treatment until June of this year when it showed up in my liver.

So at the lowest dose, I was good for 3 and 1/2 years.

[kearnan in reply to debbiedo2063]

Let me know how it goes Now 2400 mg. does not seem as high as I thought it is.

[kearnan in reply to debbiedo2063]

One last question? LOL...Did you have a week off from it? One lady I read on here I think had one day on and one day off. With me she is doing one week on and one week off.

[kearnan in reply to debbiedo2063]

That is why she prescribed for me. I thought it was going to be 300 mg. (8 pills a day) but no it was 500 mg. for each pill so that is 4,000 mg. a day. Because of my height and weight (obese) she said she did 4,000 mgs. I cried all this morning and did not take the first four pills until noon.

I will wait and see but I think I am done with any nasty side effects. I live alone and need to be able to do my shopping, laundry, etc. I think I am getting mentally to the end of the road.

I would rather have 4-6 months of feeling normal then a year but being 1/2 sick or that fatigue I remember from the Ibrance in which I got off after three months.

[kearnan in reply to goat2017]

what exactly is this hand/foot syndrome. overly dry, or skin peels off???

[debbiedo2063]

HiThey are doing 2 weeks on and 1 week off. You are prob better with a week on then a week off sounds like a good introduction to it. Hope it goes well , let me know how you are doing. I am back on pills Friday.

Debra xxx

[kearnan in reply to debbiedo2063]

How was your week off? Were you extremely tired? I just remember when first starting Ibrance, how bad the fatigue was bc I was not experienced with it and then how I could not wait until my week off which was 10x worse than being on it. I was in bed the entire week off. I only stayed on that for 3 months.

[debbiedo2063 in reply to kearnan]

hi

After speaking to oncologist I am now on 2000 twice a day. Side effects bit nauseous and fatigue but better than on the 4900 per day. I have said I will see how this cycle goes and if I need to will cut to 1500 twice a day. I am prepared to try it but not to the point where the chemo takes away quality of life, especially as lower doses are proven to work.

I am 2 weeks on 1 week off, I’m in UK.

[kearnan in reply to debbiedo2063]

I am thinking like you. This was only my first dose of 4 500 mgs pills at noon (bc I can't eat early in the morning). With the targeted therapies, I felt pretty normal and did not have to take naps, etc. This knocked the heck out of me and it was only my first dose. I live alone so I need to be able to take care of myself. I think I may have been spoiled the last few years bc I basically was able to live my life without too much interruption. This drug, oh no.

Maybe tomorrow, I will try again but only take two of them in morning and two of them in pm and just see. I was just a bit surprised by how ill and tired I felt and was in bed most of day and then the muscle pain in my arms and legs is unbearable. Thank you and I am glad that, for the most part, you seem to be doing okay on it. I was trying hard not to read too much before I started it but I did read some. It just happened so quickly.

[Sparky95]

I did the 8 pills a day of Xeloda 2000 mg every morning and 2000 mg every evening. I had one week on and one week off. I was on Xeloda from October to May. I developed the hand foot syndrome and found the Utterly Smooth Cream with 20% Urea to be the best. I also got cotton footies and gloves so I could keep the cream on at night. I went through more lotion in those eight months than I had in years. The other side effect were minimal for me and it worked for eight months.

I hope all goes well for you!

Esther

[kearnan in reply to Sparky95]

Thank you for replying.

[CincinnatiExperience]

I am on 8 pills per day (split between morning and evening). It was originally 2 weeks on one week off, but that 2nd week caused severe diarrhea. He switched me to one week on and one week off and I am tolerating that well. Hand/foot is an issue, but pain meds work wonders with that.

Anne (in Cincinnati)

[kearnan in reply to CincinnatiExperience]

What exactly is the hand/foot syndrome and are there different experiences with that for different women?