Xeloda

[KarenHale]

For any of you on this drug what is your experience, and how long has it worked?

[Cshipley123]

I just started this drug last night! I'll be very interested in what others have to say. Good luck to you!

[KarenHale in reply to Cshipley123]

Good luck to you also let me know how it goes .

[barbarac76]

Hi. I will be starting Xeloda on Saturday. I read some old,related posts from this site. Sounds like it is effective without too many bad side effects. Hope it works for all of us new to it.

[MMMP in reply to barbarac76]

I usually wash it down with a beer or sip of wine!!

[rubyc1234 in reply to barbarac76]

I started Xelota (oral chemo) on May 31st 2018. I have had next to no side effects except a bit tired. My scans are stable as of a month ago. I was very sick with lung mets about this time last year and it took until May until they put me on the drug. It took that long to do the scans and the lung biopsy took a long time to have done. I got sicker and sicker from Feb to May and it was gradual improvement but in December I felt 90 percent back and cooked Christmas dinner for 18 people. I feel I have my life back. I am doing well and trust there will be many more drugs that I can be put on. My oncologist says there are many drugs she can prescribe for me once Xeloda stops working.

[barbarac76 in reply to rubyc1234]

Thank you for your response. Your story, like the stories of others who have responded, has truly reduced my stress that comes whenever I start a new treatment. There's nothing like communicating with a fellow sister who has been where you are going.

I'm very happy that you have responded so well to Xeloda without experiencing the side effects. Sounds like you went through a very tough time. So happy that you can enjoy life again.

[rubyc1234 in reply to barbarac76]

It was tough enough. Even in July I remember I could hardly pull 3 weeds out of the garden because of shortness of breath and it took until late October before I could walk in the malls with no lung pain. About December 1st the lung pain totally was gone. Now I have a bit of wheezing here and there but nothing really that holds me back. I am quite pleased. I plan to do some travelling this year. When I first found out I had Mets I thought I was a goner and the oncologist said, "I expect to bring you back to a high quality of life." I almost cried and she has brought me back. So, yes, be encouraged.

[BeckyHobson in reply to rubyc1234]

May I ask what you daily dosage is?

[rubyc1234 in reply to BeckyHobson]

I take 3 tablets (1500 mg) twice a day for 2 weeks and then have 1 week off. I had a bad gastroenteritis bug for 6 days in January and since then I have been having a lot of gas and stomach upset after eating certain foods. Wondering if this is the aftermath of the bug or could it be xelota? The nurse thinks not the xelota.

[KarenHale in reply to rubyc1234]

The Xeloda gives me terrible gas. But so far it’s my only side effect so I’m OK with it.

[rubyc1234 in reply to KarenHale]

Good to know. The gas, cramping and rumbling abdomen can be uncomfortable. It has been sporadic since January and I thought I had the flu as it was so severe for 6 days and the diarrhea was non stop. Then for 2 weeks I was fine and then another bout of gas and diarrhea. My stomach has been rumbling and gassy for much of the last 3 weeks but some days there is nothing. What to make of that! I had a lovely roast beef dinner Sunday night and was fine Monday. Then Tuesday I was gassy and crampy. Last week I contacted the nurse at the cancer centre and she said eat bananas, rice, white bread and applesauce and when I eat only this I seem ok. Sent stool specimen to the lab at the cancer centre and have heard no word so I imagine it was okay. Go the the cancer centre tomorrow so will ask some questions.

For 8 months I had no side effects at all and still not convinced it is the xelota.

[Jaxon2007]

My sister is on this drug, lost all her hair after 2nd treatment. Had a scan last week since its been 3 months and cancer has moved into her right leg bone and chest cavity, radiation took care of cancer in hip bone and liver. Her blood work is good and since she was on IBrance for a year, which was the wrong treatment, all could have started before the Xeloda. Except for losing her hair she has no side effects.

[Wolverine19 in reply to Jaxon2007]

Why was ibrance the wrong treatment?

[Jaxon2007 in reply to Wolverine19]

My sister's cancer type had changed, the first oncologist would not listen to her and just kept insisting it could not change, but what MD Anderson could determine from what tissue they could test it had, it was no longer HR positive, Her2 negative, it changed to Triple Negative, and her cancer needed a drug that targets the cancer, Ibrance does not we were told at MD Anderson.

[Wolverine19 in reply to Jaxon2007]

Thank you Jaxon, I maybe switching to either ibrance or verzenio soon. It is comments like yours that that'll help me to learn the right questions to ask my onc. I will keep this in mind going forward.

[KarenHale in reply to Jaxon2007]

Thanks for your reply. I was on Ibrance and Letrozole for 18 months before it stopped working. I had to go on regular chemo, which hasn’t worked, so I already have no hair. Of course every new drug we try we hope is the miracle cure. Good luck and prayers for your sister.

[Jaxon2007 in reply to KarenHale]

Karen, I had to change treatments after two of Xelodo, my sister and I don't talk about it often, sometimes I like to just forget and be normal without everything centering around cancer. I'm on Halaven and that's probably why I lost my hair... good luck to you

[Kimr2081]

HI Karen,

I have been on Xeloda since about September. It's actually been a fairly easy drug to take. I have not lost my hair and my doctor said I wouldn't. The one side effect that I think most people experience is symptoms similar to hand, foot and mouth disease without the mouth part. A lot of kids get it although mine didn't. It can cause some peeling and cracking on the palms of your hands and bottoms of your feet. I started right away putting a thick foot cream on my feet at night and sleeping in socks which I hate. They symptoms didn't show up for several months but then they did. It also felt like I had sunburned my feet and then was trying to walk on them. My hands are not to bad except that my Iphone doesn't recognize my fingerprint anymore - haha. I was taking 3 pills in the am and pm and my doctor dropped the evening to 2 pills and it has helped a lot. Other than that, which trust me, it might not sound like fun but it is definitely manageable. Let me know if you have any other questions. Oh and my tumor markers are dropping and my scans showed some reduction in the tumors and the others were stable. I will probably have another scan in April.

Kim

[KarenHale in reply to Kimr2081]

Thank you so much for sharing, I hope it works for you for a long time🙏

[barbarac76 in reply to Kimr2081]

Glad to hear you are responding well. It's always a stressful time when you start a new treatment. Your response gives me hope. What treatment were you on before Xeloda?

[Kimr2081 in reply to barbarac76]

I started out on Ibrance and Letrozole and when that didn't work, I went on a trial. It was 3 drugs that were FDA approved but the trial was combining them. It was Affinitor, Exemestane and another drug similar to Ibrance. It made all the tumors go away but about wiped me out with the side effects so had to go off of it. I was then just on the Exemestane alone and that didn't work so had to go to a chemo. Hoping this will last a long time. At least on the Xeloda I am able to function as if I wasn't on anything. Still work out, work full time, etc..

[barbarac76 in reply to Kimr2081]

Thanks so much for your response. Really reduces my stress. The literature about side effects can be daunting and very different from reality. I know everyone responds differently, but at least I can go into this (Xeloda) with a more positive frame of mind. I hope you continue to do well.

[Kimr2081]

Me too and i hope it works for you as well.

[MMMP]

It’s a great drug- Been on it for 3 years-TNeg - only drug out there right now- you can be flexible with dosing-

[NCDS]

Just started, 5 days. Haven’t heard much yet. Prayers!

[NCDS]

On day 11. So much better than Ibrance and faslodex! Don’t feel like I am on chemo (a little issue that Imodium remedies!) Eating, gained weight, now just waiting to see if it is working! Ibrance and faslodex stopped after 3 months. Markers jumped over 150 points in 3 weeks. Good luck.

[Cshipley123 in reply to NCDS]

How many pills are you taking? My doctor had me on 4 in the morning and 4 in the evening. It made me really sick. I'm off this week and he is going to lower the dose for the next round. I was just wondering what to expect. I'm so glad you are doing well!

Colleen

[KarenHale in reply to Cshipley123]

i take (2) 500mg and (1) 150mg in the morning and evening. I have only been on the Xeloda for 1 week. I pray it works, but my tumor markers are increasing. I'm not getting bad side effects from the medicine, but my cancer spread to the outer wall of my stomach so it is hard to eat. Sometimes its even hard to just swallow the pills. You were taking 4 pills, what was the strength? Good luck on your new dose amount, I hope it works for you.

[NCDS in reply to Cshipley123]

Three in am three in pm 500mg each. Dr is going to increase because side effects not too bad. Maybe the dose is too strong for you? This all stinks! 🙏

[Cshipley123 in reply to NCDS]

I just saw my doctor today. My dose was lowered to 3 in the am and 3 in the pm. I'm hoping the side effects aren't as bad on this dose! Yes, this all stinks!!!!!!!

[Cshipley123]

It was 2000mg in the morning and 2000mg at night. I haven't had my tumor markers checked or a scan since I just started the medicine.

[NCDS]

One month and my markers dropped about 40 points after increasing by almost 200 points on Ibrance and faslodex, even though scam looked good.

[MMMP]

3 years- it had stopped working for me- see my Dr. Next week for a new plan of attack!!!!