All about Xeloda
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Joining the Xeloda group. I will also be starting Taxotere with the Xeloda.
I’m scared of the medicine, of it not working ... but thankful to have this group0 -
Lee, Taxol is a great chemo, it knocked back all my mets by 2/3's in just 5 months. I had to stop it cause the neuropathy in my left leg was getting too bad. Onc didn't want it to be permanent, so he took me off of it. Beginning of treatment first few weeks I felt just tired 24/7 but it eased off. Towards the end I felt pretty good on it. I had no nausea, no big D. But big time chemo brain. I hope it treats you kindly.
Edit Opps I see you've already been on taxol!
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Hi everyone:)
I have been reading the past posts to check out the s/e's on this med, and I am nervous now. My onc wants me to start this med. I am nervous because of the HFS. I am going back to work in Feb. and I am a pharmacy tech that works at a mail order pharmacy and I do order entry, which is keying new prescriptions all day. So, I need my hands/fingers for my job.
I was on abraxane for 7 months and it knocked out my tumors. I stopped chemo for 2 months and my scans showed progression. 3 lymph nodes affected. My onc wants me to start the big X now, because the abraxane worked but it messed up my hands and feet towards the end. They had to reduce the dose once and give me break from it once. Abraxane was very hard on me physically and mentally. My left hand hasn't recovered 100% and my feet haven't either. Neuropathy is real.
So, what I got going on with my hands and feet already, knowing that the big X have HFS s/e's got me climbing the walls right now. So I am going to talk to my onc on Monday to discuss this, to see if this chemo the best route for me at this time. I may or may not be on this med. I am so happy that everyone is sharing their experiences, b/c I need this info.
Everyone stay great and Thank you!!!!
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Good luck, Nayda!
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Grant, any news on Liz' scan yet? Fingers crossed for best results.
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nayda...what dose will you be on? I am only on 2,000 a day, which has been keeping me NED for 2 years. Since I have been on chemo for 18 years, my onc wanted to try a low dose.
I sell items online on 7 sites (eBay, etc) and am on my computer all day long. The tips of my fingers are a bit numb, but I haven't had any problems typing at all.
The palms of the hands can hurt, but my fingers are okay.
I use Aquaphor constantly.
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nayda...I started out at 2 weeks on and one week off, but when my feet got red and sore, I was given a 2 week break, and then I went to one week on and one week off.
As soon as you have red and sore hands and feet, just let him know, and he SHOULD reduce the dose.
Good luck!
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is there anything that will help prevent the sore hands and feet??
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Nayda, my MO, who recently retired as head of the VA Cancer Institute, told me that oncs almost always, by practice, start patients on the highest dosage of a regimen recommended and see "what they can take". They subsequently back off as needed. My oncs, thank goodness, are believers in living as long as possible with the disease but with good quality of life. He started me a bit lower (with the agreement of my Sloan Kettering second opinion back-up onc) and has lowered me a couple of times. So far, I'm doing great. Stable after 12 months on Xeloda.
I'm 5'6 and weigh 135. My dosages were initially 3000mg/da (1500 am/1500 pm), dropped to 2500mg (1500 am/1000 pm) because of HNF, and then a couple of months ago to 2000mg (1000 am/1000 pm). Current and very trusted onc offered to drop me to 1000/500 last week, but I declined. I'd rather deal with my grade 2 (her rating) HNF than risk the medication not working. All a balancing act.
Denny is our shining star...we all want to do as well as she has!
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Leee,
I don't think there is anything that can prevent it because it's chemo leaking from the capillaries in the hands and feet, but in most cases it can be managed by rigorous use of creams. Your oncologist can also lower the dose if you have problems. Some people don't get HFS at all so maybe you will be one of the lucky ones!
All the best,
Katty
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my cousin is diagnose of stage 3c brast cancer last 2010.in 2018 she had hysterectomy for endometrial cancer stage 2b.the biopsy result said it metastised for breast primary.it also metastised to her both lungs.last year she had a chemo for 8cycle using gemcitabene and xeloda for oral chemo.after that all treatment is failure.there is increase in metabolic activity around her both lungs,peritioneal,and suspicious lymph nodes around her vaginal stump.her med onco suggest her to have a test.ONCoNomics.she had it done.her only worries is the accuracy of the test done to her.she is chemo resistant.what if the test is not accurate what will happen to her?is there still hope.what is the best treatment for chemo resistance?
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I'm FINALLY back on Xeloda after two weeks of recovery due to poor comunications with MDA nurse through the patient portal. In 4 years, I've never had this experience and it pissed me smooth off. I got tired, angry and frustrated with dealing with her uninformative (and lack of) responses and emailed the doctor on Thursday. He immediately responded (at 7am) and explained to me why an additional lab had been scheduled, then emailed me back immediately after the results came back to let me know to restart the Xeloda.
The nurse SHOULD HAVE given me that info a week earlier and it would have saved a lot of angst.
Rant over...unless there's a delay this week in getting my refill!
Ugh.
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Thanks Joyner! I am motoring on here.
This is the last day of my pills and my hands are feet are on fire. Sitting here with my feet on ice packs. I do have the cooling socks, but can't walk in them. I sit at my computer all day, but have to get up often since I have a bad back, unrelated to my BC.
Leee-there's nothing to prevent the soreness but you might not have any problems. It is tolerable.
Puregold-the new tests are very accurate and when I had Foundation One testing it did show that my BC properties had changed. This opened up the path to get different chemos that might very well work. I previously was not a candidate for Xeloda, but I have been on it with Herceptin for 2 years and it is keeping me at NED, thanks to the testing.
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Lynn - We should get results this week on her portal. Next MO appointment isn't until next week.
Leee- My oberservation of HFS is that minimizing what you do with your hands and feet will help. It's probably not very practical but I try to do as much as I can around the house so my wife can rest her hands and feet.
I agree, Denny is truly an inspiration to everyone. We pray for results like this for all of you!
Grant.
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Hi Ladies,
So I had follow up appointment with my ONC in order to start the 2nd cycle. We did the blood test and my WBC count were very low around 700. I always used to have low blood count around 1100-1300 but this time it was very low. So my ONC decided to put me off this week and again check the blood count this Friday and decide on resuming the cycle. But this time it will be 7/7 with 3000 mg dose a day. I am hoping to do well with 7/7 cycle.
Take care ladies.
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Thanks for the update, Naesha. Hoping that the delay and the change to 7/7 will do the trick.
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Today is the last day of the med portion of my first cycle of Xeloda: 3000 mg, 14/7. I was on a trial until recently. This is my 4th line of treatment since being diagnosed with stage IV. I have two liver lesions that are particularly stubborn.
Side effects have been tolerable: mild but persistent nausea and the bottoms of my feet started feeling pretty darn sensitive in the past couple of days.
Does it get worse with each cycle or stay pretty much thesame?
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Got the results of my second pet/ct scan yesterday, i.e. since starting Xeloda + Herceptin (+ Xgeva); stable sclerotic bone mets in spine - yeah!. I am so grateful. I find this treatment quite tolerable, - fatigue has been the greatest challenge, so since I have had two ‘stable scan results’ in a row now, my MO agreed to lower the Xeloda dose slightly. We’ll see if that reduces the fatigue.
Take care,
Meja0 -
Hallelujah, Meja!!! YIPPEE!
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Liz got her results yesterday and they were good. Liver and bone mets were stable or smaller and one new small spot in her lung was found. She is having some pretty bad leg pain in her femur that sort of comes and goes and we're not sure what's causing it. Last bone scan shows the mets in her femur is stable. We're praying that Xeloda continues to do it's job.
Grant
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Great news, Mesa and Liz! Liz I hope they can figure out what the leg pain is and fix it
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YAY Liz and Meja!!!!! WHOOO HOOO!!!!! Thank you LORD!!!!
So my friend thinks she found the actual name of my itchy skin condition that the dermatologist in NY thinks is from my cancer... https://dermnetnz.org/topics/paraneoplastic-pruritus/
yup...and 2 of the pictures there #5 and #7 look exactly like what i get on my elbow and knee.... anyway...it seems to be clearing up now...so I am praying that it means the Xeloda is working!!!!!
Nicole
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Yay Meja & Liz! Great news!
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Hi All,
I have been on Xeloda for three months. It has reversed the progression of my disease. Very exciting. I get fatigued, but that is tolerable. I am using Cera Ve lotion on my hands and feet and have had no problems. Unfortunately, I have gradually developed a rash that has spread from my hands and feet to my torso. It is miserable. Has anyone else experienced this and do you have suggestions?
Meme
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Meme-please call your onc immediately about the rash!
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meme- I have been off xeloda for a bit now but spent a good 5+ years on it. Over the years there were times I git an itchy rash. No patterns or reason. Just would appear during a random cycle. I took Benadryl to help it and the rash went away.
Do check in with your doctors. I just wanted to let you know that someone else had the same SE as you and you aren’t alone.
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After 5+ years on Xeloda I'm moving on to Ibrance due to progression in my bones. No complaints, grateful to have had so long on Xeloda. I have 2 full, unopened bottles left from when I took a 2 month break. If anyone has suggestions on what to do with them, please PM me! Wishing you all lots of time on this med.
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Good luck, Linda! I was on Ibrance/Faslodex for 23 mo and loved it! Wish I could have stayed on it. There's a wonderful group of women/some men on the Ibrance string. Do join them!
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Thanks, Lynn. Nice to know it wasn't a difficult regimen for you. I know it should be fine, it's just the change after so long that's stressful until I get into the routine. Hope you have lots of time on Xeloda.
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