All about Xeloda
Comments
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Real quick note, if you are having sun exposure issues, check out Coolibar.net. They have very nice UPF 50+ clothing. I have gotten some; they size a bit small. Use code JE20 for the next couple weeks for 20% off. (No I don't get a kickback!) Their stuff is very high quality.
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Nel,
My fist round I felt like I had a little mania. I was not sleeping too good but had so much energy. I think it's settled in now that I just finished my 3rd round but I still feel better than ever. Is it working???😳 I don't even need to sleep half the afternoon. My TMs dropped from 2600+ in May to 270 this week since my 3rd round. Let's hope we get a good run on this drug. I go to Dana Farber for my main MO and he works with my local MO and I take 1500mgs twice a day two weeks on one week off. They said something like taking it like this I actually get 3 weeks. I don't understand all the calculations they do in front of me but whatever it is I feel great like you. No SEs at all!!
The only thing was my potassium, calcium and protein are a little low and Lita said that happens so I'm drinking milk and working on my diet. Glad you feel good.
Have a great weekend
Anita
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Photogirl (Anita)
Exactly I felt like I had some mania as well So strange - a bit scary. Like you I seem to have settled in a bit. On tykerb for 3.5 years, almost always needed to nap in the afternoon. Not so much now Hope I have a long run of stable or NED First scan will be in mid September. Fingers crossed
On FB/Xeloda page there were comments about using condoms while on xeloda and for 48 hours following last dose Has anyone else heard this? And why - possibility of infections??? Inquiring minds and all that
Be well
Nel
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Nel and everyone, months back, someone shared on these threads that people should wash their underclothes separately because vaginal secretions carry X, and wash towels separately, too. (Personally, I think that's going a bit too far...I still wash everything together.)
As for condoms, using birth control is advised while on X. It is a POWERFUL drug which can cause birth defects in babies born to women of child bearing age. Most of us are well past that stage of our lives, however😛.
As with most powerful drugs, it's a good idea to wash your hands after taking your dose, and definitely store it away from pets and children.
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vaginal secretions? 😂😂😂😂😂😂. I wish
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That's what I said....haven't seen any of that for years.
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My thoughts exactly! 😂
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Me four!
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Right? I thought the exact same thing!
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You ladies are too funny buts it's so true🤣🤣🤣
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I forgot to mention that this morning I news from my MO about my blood work. Three rounds of Xeloda under my belt. Tomorrow starts 4 the round. My blood work all came back normal except my Alk Phos which dropped 100 point now only 175. It's the lowest it been since I was first diagnosed with the bone mets. I was so happy. All other liver enzymes are completely normal just still have low platelet count and anemia but that medication must be really kicking this cancer. My TMs were 2600 in May now down in the 200's. I'm shocked. I feel better than I have felt in a year.
I hope I get a run on this drug. Ibrance was not a good fit for me.
Keep plugging away girls.
Anita
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Upon starting Xeloda 14 days ago H&FS started within 24 hours, I was a little freaked out thinking it would worsen, however over the week it got better, still a little tingle and now nothing really...... although I discovered I cannot clap!!!!!!
My Onc started me on Vitamin B 100mg daily upon commencing Xeloda, which I did and after speaking with a fellow patient she thinks the VB made a difference for her, so I thought I would share with you all
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Thanks for the tip Emily-Louise,
I just got back from my MO and he thought my hands were a little red, but I was at an event this weekend and clapped a lot. Better not do that anymore. VB might help, but I have not had any trouble so far. One thing they told me is to wear pure cotton socks. Not sure why, but also no pressure to the feet or hands. I wear gloves when I work too.
Thanks again,
Anita
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I've been away for two weeks, so not totally caught up, but congrats, Anita, on the huge drop in your TMs! That's wonderful! And good to see you here, pajim!
I had labs yesterday -- my last day off after cycle #4. Still holding my breath to get my TMs which take a couple of days, but in the meantime, I have a question about WBCs. On June 1, they were 7.6. Yesterday, they were 3.4. Has anyone else had this much of a sudden drop while on Xeloda? Mine had been in the 3's all the while I was on Faslodex + Ibrance, but had been steadily climbing since changing meds in March. My granulocytes took a similar dive -- from 3.8 to 1.4. Just wondering if this is par for Xeloda. I was so happy X didn't seem to be impacting my WBCs. Now I'm concerned...
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My counts took a serious dive right from the beginning of my cycles and have stayed there. That's probably why I'm so fatigued all the time 🤐.
Haven't had to have any transfusions yet, so happy about that. Asked MO about it, and she's not overly concerned yet.
It's just one of the things Xeloda does.
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Dianna, My platelets took a dive on X and I'm anemic but my White Count has remained a 5. Since I went off Ibrance. That killed my White Count. Now I'm on my 4th round of Xeloda and I have 3 prescriptions left. So Monday I asked my MO why I only have this many left and he told me that he is watching my White Count because sometimes Xeloda will start messing with the White Count. So I think maybe it's is messing with your Count. My calcium is a problem since I've been on X just barely normal and had to postpone my Xgeva last time due to really low value. Ask your MO he might tell you the same and adjust your dose. Hope this helps. I just had this conversation Monday.
Anita
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Thank you, Anita and Lita. Your experiences are helpful to know. I'm just concerned b'cuz when my counts were so extremely low right after 19 mos. on Ibrance, my local onc shocked me when he said he might not be able to give me any chemo if my counts didn't rebound, which, thankfully they did as I was titrated up on X. So this drop is a bit concerning because of that earlier comment. And I'm only on 2000 mg./day, so a dose reduction seems unlikely.
The good news is my TMs -- or at least my CA27-29 -- also went down another 31 pts. It's still in the mid 300s, but still headed in the right direction. My CEA on the other hand continues to trend upwards. My UCLA onc said she wasn't concerned last month b'cuz my CA27-29 is coming down. We'll see what she says when I see her in a couple of weeks, after upcoming scans.
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dlb and others: Just got the first set of my blood work back this afternoon prior to starting Cycle 17 (Kaiser sends the WBC, RBC, Platelets, and HCT the same day / liver and kidney stuff takes 24 hrs). Well, my blood levels are the LOWEST they have EVER been.
WBCs - White cells 3.7 (VERY low end of normal)
HCT - Hematocrit 35.1 (also very low normal)
Platelets 167 (also very low normal)
RBCs - Red cells 3.23 (BELOW NORMAL - should be higher than 3.60)
This is classic Xeloda. MO warned a few appts ago that if they REALLY drop below normal, I will have to have a transfusion. Going to ask tomorrow what I can do to raise RBCs - if anything. If kidney, liver and calcium levels are okay, she'll probably clear me to start Cycle 17 on Sunday.
I will tell you what she says tomorrow.
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I'm sorry, Lita. It's just so frustrating to be on a med that's working, and then run into these kinds of complications. There is some talk today in the FB Xeloda group about going to a one week on/one week off schedule to ease SEs. I'm not sure what your dosing schedule is, but maybe experimenting with it, even temporarily, might be worth a try.
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Dlb, I've been on the 7 on/7 off dosing for almost seven months. Incidentally, I started Xeloda in May of last year, so it's been about 13 months. MO said the longer you're on X, the more toxicity builds up, and of course the more it affects your counts. This is probably true for ALL forms of chemo. They really take a toll on the body.
One thing I've learned is just because it's pill-form doesn't mean it's a piece of cake drug. Consider all the bad SEs with AIs. I've never taken those yet, but I hear they can be brutal.
I'm not at all surprised that some women have had to quit X b'cuz they simply couldn't deal with the SEs.
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Just received the other blood panel results for liver, kidneys and calcium. All good, so only the red and white blood cell counts are low. On a positive note, the calcium supplements brought my level up to 9.4!
Hope these stay the same for my Zometa infusion in 2.5 wks.
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Good morning to all.
I had a marathon of onc appointments yesterday, seeing both my MO and RO. Both thought I looked better than last time they saw me. MO thinks my new steroid will jump start my adrenal gland and get me back on my feet. Blood pressure was better (it's been extremely low) Other blood work was mixed. Only real concern is inching up of TM after my initial big drops on Xeloda. I really hope to stay on X as my side effects have been minimal.
RO says I have nothing that needs immediate rads and holding off is better, especially as I work on the fatigue. May need a round on T2 in the future. The confusing part is still the location of the brain lesion. He's convinced it's not in the lining/fluid or I'd be in much worse shape. The MRIs are not specific enough to say what layer it's in. It will be watched carefully.
PET is scheduled for July 17.
You all help keep me going for sure. What courage on these boards.
I found the word "ataraxia" a while back. It means "robust tranquility." I work on that.
I'll cross post this on the Bone metsboard.
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Anita, what an awesome report! Very happy for you. Kaption, I think your docs are doing a good job coordinating your care and looking out for your quality of life. Wishing you more tranquility and less fatigue along with dropping TMs. Deanna and Lita, sorry your counts are wonky. They can play with your schedule and dose more if they need to, right?
Yes, nobody clap!! No pressure, friction, or heat. I learned not to clap back when I had Taxol. It would set off neuropathy tingling big time. Hfs is a different thing, but the no-clapping rule still holds.
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Regarding Hand-foot Syndrome --
This resource may have been posted somewhere on this 241-page thread, but I recently found an article from July 2010 Oncology Nurse Advisor entitled "Prevention and management of hand-foot syndromes". I will very briefly summarize some main points about causes, prevention, and treatment; along with some ideas that occur to me.
Possible causes and prevention:
Small amounts of the chemo leak out of the capillaries into the hands and feet, damaging tissue. Therefore avoid heat, pressure, friction, and harsh chemicals on hands and feet. Some examples would be hot water (incl. with rubber gloves that trap heat), sun, saunas, tools that cause a lot of pressure. So be mindful when you cook, garden, build, etc.
Local delivery of high drug concentrations occurs through the sweat glands, of which there are many on the palms of the hands and the soles of the feet. My idea about this is to wash the hands and feet a couple hours after the pills (peak blood level), and whenever they feel sweaty. I also change my socks a lot, and take off my shoes when I am sitting for any length of time.
I asked my onc if I needed to take these precautions on my week off, and she said probably not. The drug has a short half-life; it is out of your system fairly quickly.
Possible treatments:
Dose reduction
Pyroxidine aka Vitamin B6 (Is that what you are on, Emily-Louise?) I wouldn't take a supplement without my doc's advice, but I figure I might as well pay attention to foods that have a good amount of B6, such as turkey, chicken, salmon, eggs, cheese, lentils, beans, carrots, spinach, garlic, bananas, whole-grain flour, chia seeds, and pistachios.
Cyclo-oxygenase-2 (COX-2) inhibitors to reduce the inflammatory response. e.g. The NSAID Celebrex. Ask your doctor. I did a bit of research and found that oregano, holy basil, and ginger may have similar (though I expect smaller) effects, so I cook with them.
Vasoconstrictive therapies such as localized cooling. So I rinse hands and feet with cold water, especially a couple hours after my pills or whenever they feel hot.
Topical emollients, especially those containing lanolin. (Lansinoh is a nice one; find it in the breastfeeding supplies section.)
I hope these notes will be helpful. Here is a link to the article.
http://www.oncologynurseadvisor.com/ce-courses/pre...
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Really good tips! My onco also said take b6 and b12 during treatment.
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Oh, yeah. I have good news to report. I found out this week that my TMs went down 30 points after my first Xeloda cycle. This is the first drop in a year. Xeloda is working!!!
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Happy dance, Shetland pony!! Fireworks are for you!
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Shetland, that's excellent. And thanks for the tips.
P.S. I saw your rant about getting the pills. What a pain. Can your doc prescribe enough for two months? Guess I'm lucky my cancer center pharmacy carries Xeloda.
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Thanks, Kaption and Pajim! It's so nice to finally get a good report, and to have someone to share it with.
Regarding the prescription troubles, I am trapped by my insurance company into using a particular, mail-order only, specialty pharmacy. And the insurance company only allows one month's supply of anything at a time. I'd like to get the refill a couple days ahead so I will have a small cushion for when they mess up the delivery day, but so far I can barely get it in time to not skip doses. This time the pharmacy sent me only half what I needed -- what the doctor ordered -- and then said it was too soon for a "re-fill". It took a lot of time and effort over more than a week to finally reach someone who knew his job and had problem-solving skills.
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ShetlandPony,
So glad to hear Xeloda is working. I'm on my fourth round this week. No SEs as of yet just a little redness to my hands when I work. It dropped my TMs like a whirlwind. We all just need to keep going, sounds like there has been a lot of great news lately! Hope everyone enjoys the weekend and thanks for all the tips on this drug.
Anita
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