hi everyone- my dad had some small progression on Lynparza for the BRCA2 gene and he now will be moving on to Xeloda. We are quite nervous as this is his first true chemo. He was on ibrance and Lynparza previously.
Appreciating all words of wisdom as we start this next drug/ journey. Thank you soooo much
I am very lucky to have had minimal side effects, but I am on the newer regime of one week on and one off 1500mgs in the morning and 1500mgs in the evening. I always take it directly after food, apparently this reduces the absorption rate, which is a good thing. I drink 400mls of water when I have them. I have not had diarrhoea but I am doing my best to eat just simple things, nothing fried, spicy or over sugared. My hands and feet I have been using 10% urea cream twice a day and was using Voltaren cream daily but my skin is behaving so I have gone down to once every second day. The thing I've had to learn is when fatigued you must rest, even 20 minutes can reset my energy levels. Hope you find this helpful. I have had a good response to Xeloda, so any side effects are ok by me. I am on this drug til it stops working, which I hope will be many years away. Tell your Dad I wish him a great response with minimal side effects. Best wishes.
My mom was on xeloda for 8 months. One of the easier drugs for her …..other than some redness and peeling on her feet toward the very end. She would have loved to stay on it longer . But had slight progression on it after 8 months. We were nervous also but overall she great on it.
was she compromised with her immunity at all?
No, she wasn’t .
I’ve had three rounds of Xeloda (along with Tukaysa) and have tolerated it pretty well. I’ve been applying Voltaren cream (diclofenac) to reduce chance of HFS side effect. I’m taking 3000 mgs a day, 2 weeks on, 1 week off.
I hope the Xeloda will work well for your dad and not cause him a lot of side effects. Sending both of you hugs and prayers as you navigate this new protocol.
Thank you soooo much
Please make sure he gets a DPD test prior to treatment if he hasn’t already. People that have a full or partial DPD deficiency are at a high risk for fatality because they are unable to metabolize the drug. The FDA recently updated their warning label to include testing yet many oncologists are slow to adapt. My mother was prescribed Xeloda in 2021 and died a few excruciating weeks later in the ICU from fatal toxicity. It was terrible. You can learn more here test4dpd.org. Please ask for testing if they haven’t already. I never want anyone else to die the way my mother did because it’s completely preventable!
Thank you
Hi Jenniferp2122 - I have been on Xeloda since the first week of January 2023, so in one more month I am hitting my 2 year mark. I do not have the BRCA gene, but I am lobular, which is a different beast than ductal. Harder to see on any kind of scan, harder to treat since it outsmarts most targeted therapies and chemos due to its ability to not form tumors, but spread in lines and sheets because of it's mutation of the CDN1 gene. That being said, I failed all the targeted therapies I originally started with (Ibrance/Letrozole) within one year, Faslodex within 6 months, I was allergic to Piqray so that was a non starter......And here came Xeloda. I'm going to hit two years and my markers are still at normal. I did have a lot of foot pain but I started Gabapentin and it went away. I use a 20% urea cream on my hands and feet and they are great. It's important to avoid over washing hands so I do use nitrile gloves doing dishes, and doing things where I would normally need to wash my hands after doing. I did get some fatigue at first, but that settled down after about 3 months. My hair started growing like crazy on Xeloda, not sure why.....but it's growing about 3 inches a MONTH. My doctor can't explain that, but it's nice to have long thick hair again. I believe the most common side effects are nausea/diarrhea/constipation. I got a tiny bit of nausea the first few weeks but it went away on it's own, no other gastro side effects for me. My cancer is in my stomach and colon, so that says a lot about how easy it's been for me with no gastro side effects. Xeloda was created as an "easier" chemo than most for most people. I take it one week on and one week off, 1500 mg a.m. and 1500 mg p.m. I don't think it would be as easy to tolerate if I were to have been prescribed the two weeks on one week off. But it works so well one on one off! I hope, wish and pray that your dad does well with it. Many people do great on it. Best wishes, and you and your family will be in my prayers that your dad does great with it! Take care!
Thank you so much for this very helpful info. Thinking of you!
Your dad is on my track. I’ve had both iBrance and Lynparza. Then I went to Afinitor for a very short time before Xeloda. For me , once we quickly adjusted the dose down to manage HFS, the rest of it was a breeze.
Don’t fear it just because it is chemo. He will likely be fine on it. Just make sure to take all the precautions for managing skin on hands and feet. Start moisturizing both now, to get skin in best condition possible before he starts.
Thank you sooo much. Are you still on Xeloda now?
No. It worked really well for me initially but after a while it started to show signs of cancer progressing again. 7 months
Now I’m on a targeted chemo, infusion, Enhertu(for those with Her2low). Seem to be doing well so far
I know this is a older posting, but wanted to add my wife, who has stage 4 terminal Met breast spread to bone cancer, has been on Ibrance, then Truqap, and now Xeloda, just starting 7th cycle, almost no side effects on 2500 mg a day, two weeks on, one week off. She does have Anemia which chemo pills do cause and we try out best to counter with light exercise and higher protein diet and b12, b9, and some iron supplements. Her CA 27 - 29 and CA 15-3 tumor markers have gone from a high of 880 at the end of her few months on Truqap, to a new low of 170 on Xeloda after 6 cycles. Best of luck to your Dad, we have been fighting Breast Cancer from Aug 2017 until now.
Moving on from Xeloda
starting Xeloda (capecitabine)
Xeloda
XELODA
Xeloda
