All about Xeloda
Comments
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Intolight, sounds like low blood pressure. My mother used to get similar symptoms doing the same thin
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It's possible, but my BP has been either great, or a little on the high side--not enough for concern, but high enough they sometimes have to have me stand up and take it again in the DR office. It was 129 / 82, and 129 / 92 the last two times. Of course, lately I have only had phone visits! I'll have my DD check it tonight...thanks!
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I am with Kaiser NOrthern California and really like the video visit. At one point my doc was at home and the audio wasn't good, so I spoke to him on the phone while seeing him on my computer. I feel more connected if I can see my doctor. If not in person, this is an excellent option. There is usually someone who helps you with the connection before you talk to the doctor, and you wait until they are ready to join in.
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IntoLight- I too have had dizzy spells when I've bent over. I believe it has to do with my inner ear. I move slower now if i have to bend down to pick something up and try to keep my head upright. It's a bit of positional vertigo for me though it doesn't always happen, try to avoid the situations.
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Nina, I am also with Kaiser but SO Cal. I have had phone visits but have my first video visit next week and I appreciate your input. So far I have been pleased with my care. I was just posting when I saw your next note... My onc said don't bend down too! Ha!
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Hi, It's been a while since I posted my good news - after 3 cycles of Xeloda my liver and rectal cancer issues seemed resolved on the July PET Scan (but 2 new spots elsewhere do need follow up in the future). My problem now is I finished cycle 6, 3000mg a day, 2 weeks on 1 week off, and have had terrible foot problems. Now I know what terrible feels like. I couldn't walk this last week because of the pain when I walked on my heels. Feel better now, I've had a week off and today I walked the dog!! I start Xeloda again in two days, on a reduced dosage, 2500 mg a day. I've tried many creams but did not realize till last week I could be using Ibuprofen and Tylenol, which has helped a bit. What I want to know now is has any one used CBD cream products to help reduce the pain from the inflammation on the feet? Recommendation? I'm also looking for shoes that won't hurt and have ordered 5 pairs of dearfoam slippers to try. One day I wrapped my feet in some old foam I found and made some funny looking shoes out of them so I could have a cushion when I walked.
Also I've been given abrecommendation to try Celebrex for pain relief, and Henna for peeling hands and feet. Has anyone tried this suggested relief ideas? THANKS
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OK. I've really tried but I can't figure out how to add to my treatment info in my signature. Here's the answer I get when I look up what to do.
"To enter your information, you will need to have an account and be logged into the Community. Next, click on My Profile in the gray bar at the top of any page. Once in My Profile, click the My Diagnoses and My Treatments tabs to add your information. Follow the steps in each tab to fill out the information that you have so far. You can always come back and add more information or edit what you've previously entered."
BUT THERE IS NO GRAY BAR THAT SAYS "Profile". What am I doing wrong? I'm sure it is obvious, but I'm beyond figuring it out for myself. Thanks if you can help.
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ninaCA- i had terrible foot pain and with my dose decrease from 2500 to 2000 per day, I no longer have any foot issues. I am on 14 on and 14 off due to low ANC issues. I am also at kaiser and the video visit was quite good. hope your foot issues resolve- walks are nice especially when the air gets better.
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HI NKB- Glad to hear of no more foot issues with reduced dosage. I hope reducing to 2500 a day will work for me. I was told original dosage was on weight- I was 145 pounds and they gave me 3000 per day. I hear lots of information about different starting doses and then almost everyone has a dose reduction. I was able to tolerate 6 cycles which resolved my tumors on a PET scan so I guess it's good to start high. I was told a reduced dose should not affect my progress. So far my ANC has been in the low normal range (it did go bellow normal when I was on Ibrance). Just wondering if you taking Aromasin with Xeloda or just Xeloda? Which Kaiser are you with? I'm with Northern California, Oakland. TAKE CARE,
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HI ladies. I'm new here, diagnosed early last week and already did 1 week of Xeloda at 2000/day. I will go up to 3000/d next cycle. I've been lotioning my hands and feet daily. Any other tips or tricks for the future? I wrote down every day's side effects last week to be prepared for next time but being a higher dose, I'm a bit nervous.
Anyone else liver mets?
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Hi Pamela. Welcome to this site although I am sorry you have to be here. I too had liver mets (had because after three cycles they no longer appear on the PET. Yay Xeloda!) Everyone reacts different but I found my SEs have lessened a bit by the third cycle although I did reduce dx from 3500 to 3000 after first cycle. Hang in there and ask anything.
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into---how is your BP? Xeloda lowers my BP, so I had to cut back on my BP meds
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Welcome Pamela, but sorry you've had to join us. I too have liver mets.
MO called last night at 830p; bless her hard-working heart. PET scan Friday am after 3 cycles, showed regression in liver mets, but also 6 new very small lung nodules. Ugh, it's always something, up and down.
Nina, I've pretty much been wearing only slippers for the last 3 yrs. because of neuropathy, but now Xeloda, too.
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Denny, my BP is normal to high so I doubt it is that but it may be inner ear? since I have sensation in my ears from time-to-time. Weird...
Bliss, glad to hear from you and that Madame X zapped the liver, but sorry about the lungs. I too wear slippers all day except when going out. Looking for the perfect pair but haven't found them yet.
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Bliss...Sorry! But hang in there!
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So I have one solid week of Xeloda under my belt. Seems to be going ok - I do notice that my skin feels kind of prickly (best word I can think of) about an hour after I take it but it calms down in a few hours. I can kind of tell that my feet and hands are probably going to have issues as I continue forward. I also got a call from the scheduler saying that they were adding an infusion to my appt on the 23rd, which threw me for a loop because the Drs hadn't mentioned an infusion to me. Apparently it is zometa (?) which is a bone strengthening thing. Are any of you getting that? They will do it every three months. I made them have the Dr call me because the scheduler couldn't answer any of my questions. Gave them a little piece of my mind, since I am a new patient with them I thought they should know that the scheduler is not the right person to tell me about an addition to my treatment plan. They were very apologetic and ensured that it wouldn't happen again - they understood how it freaked me out and then I couldn't get my questions answered by a scheduler. I don't know if I'm being petty or not but since I have just started seeing this group of Drs, I wanted them to know that hearing these kinds of things will send me into lalaland - and leaves me only with Google to get my answers which is NOT where I want to be. Dr. Google is a rabbit hole for me and will just send me drinking.
I also met with my Naturopathic Oncologist yesterday (I have been seeing her since my first diagnosis). Had a good visit with her. I walked in and plopped down about four books about Radical Remissions and told her "I want that to be me but I'm not able to do it alone - so you're gonna help me". For the ten seconds it took me to say that to her - I had a feeling of confidence and determination. That feeling was fleeting but now I know how it feels and have decided to chase that feeling down at every chance. One of the books I read spelled out that there is a huge difference between not wanting to die and really wanting to live. Now I know what the latter feels like. That was that feeling of confidence and determination.
Still needing reassurance with this whole triple neg thing - are there any good stories about it out there? I could use a success story to cling to.
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Deanders, that is awful hearing about Zometa from the scheduler. Good for you finding your voice and giving the Drs. what for; they deserved it. I was on Zometa for 2 years, first year every month then went to 3 mos. I tolerated it well, no problems, but I would suggest good hydration since it is hard on the kidneys.0
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deanders, I have been getting Zometa infusions every three months for over four years now. It is not a big deal. The actual infusion will only take 15 minutes, add some minutes because they usually also give you saline to flush everything out. You might feel achy for a couple of days, so the trick is to take Claritan the day before, the day of, and the day after. Otherwise, I go on with life as usual. I even drive myself because there are no immediate adverse affects (unless something unusual happens of course.) Good luck with it all.
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Thanks ladies for the support. It is very odd to me that Xeloda would work on one place, but not another. MO and I are hopeful they're benign nodules in my lungs, but if not, she'll probably move me to Piqray. She's put me on an antibiotic for now and will rescan with chest CT in 2 weeks.
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NinaCa- I no longer take aromasin- was on that just with the Afinitor. Only Xeloda and Zometa. The doses all seem kind of crazy- they do a lot of research on Xeloda at USC and they only use the dose of 2000 mg on everyone. I wanted 7/7 schedule, but, my MO was totally against it- hence my 14/14- I haven't met any one else on that schedule. On the 3rd or 4th cycle of 2500mg I could barely hobble to the bathroom, feet red, burning and peeling- I didn't think that lowering my dose by 500 mg would resolve all that, but, it has. You have had liver mets since 2003? I am so glad that Xeloda is working for you!
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I just started Xeloda on the 28th Aug because scans and TMs showed progression on my 1st line of Treatment. I have taken 1 cycle of Xeloda 7 on 7 off and my TM's went up at the end of this 1st cycle blood test on 9/9 showed increased by 22 pts. Does that mean it is not working...I was so hoping that Ibrance would work but only keep things stable for 7 months now Xeloda. Anyone know how long it takes to tell if it is working.....my TM's have always been accurate and I'm so frightened that this means it is not working...
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imagine, one of my tumour markers blipped up after my second cycle but has since dropped significantly so don’t panic yet :
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If I'm reading correctly, Imagine, Deanders and I all started Xeloda around the same time. I'm happy there is a mix here of experienced users and new ones. I appreciate any wisdom anyone has!!!
Imagine, I had my appt w/ my MO last week (which was the end of my 1st week on the drug) and she said the first blood draw would show an increase in TM so not to be worried about it. my had doubled the the previous week. She said she expected it to go down next time.
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Yesterday I had a face to face appointment with my oncologist. My blood tests suggest that all my internal organs, apart from my right lung, are working properly so I have been given the go ahead for a third round of madame x at 3200 per day. I had some slight gastric problems in the first few days of the last course and strange sensations in my hands and feet, they have continued on my week off! I also get fatigued but I am hoping to gradually build up my fitness levels after having a pleural effusion.
I will have scans in a couple of months to assess what is happening, I am hoping for at least 7 years on this regime, like one of my oncologists other patients!!
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Denny, yay on the good news. Here's hoping we all get at least seven years on Madame X!
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Yay Denny10!!
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Is it safe to dye my hair while on Xeloda? Anyone have thinning of hair because of this?
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Pamela23 -----My hair thinned a little at first on X, but it all grew back normally after maybe the first month or so.
I have been on chemo for 18 1/2 years and have used Colorsilk the whole time (except when I was bald). It doesn't have ammonia, so it is safe.
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Hi all, I know a few of you from other threads but I’m a newbie here.
Today is my first day of the Herceptin, Xeloda, Tukysa combo, so far, so good. For Xeloda, I’m on the 14/7 schedule and 4,000 mg daily dose, which I understand is based on weight and I’ve got a lot of that, lol. I’ve got water with electrolytes in addition to just water, lotion, nausea meds and Imodium. Not sure what else to have on hand or do to minimize SE’s. Any tips are appreciated.
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Hi there Mae!!
You are among long time friends..welcome.
My original dose was at 3300 mg/day (14 on, 7 off) was also based on my weight.
But I didn't last long at that dosage. I was okay the first 13 days, had diarrhea and nausea but got that under control. My feet were the problem..firey red, burning sensation, painful. I was off for a week with reduced dosage, still has fire feet, blisters..so bad I needed wheelchair. Reduced again..eventually dosed down to 2000 mg/day, 7 days on, 7 days off. My labs continued to improve and my CA 15.3 also kept dropping.
My MO wanted to get best efficacy and QOL, so now back to 2300mg/day with liver MRI in 2 days. Hopefully, it is still working.
Keep your feet moisturized. I used Aquaphor at night with socks and Okeefes foot lotion or UdderlySmooth20 during the day. If feet hurt, find shoes that have memory foam. My feet have settled down. Drink lots of water.
Others will chime in. It is not bad. Just let MO know when you start to have HF symptoms. Better to dose reduce than to keep taking extra days or weeks off to heal.
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