All about Xeloda
Comments
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Lita, I thought it was just my eczema flaring up again. It got really bad after I had ACT initially, but all of a sudden I'm sensitive to perfumes and lotions, but just in certain spots. Really? My left wrist. My collarbone area. My ankles.
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Timothy, I use a pure cannibis oil, intended for medical use. It's inhaled with a vapor pen (so its a vapor not smoke) it's THC and CBD. It can also be ingested, butI don't like edibles. They upset my stomach. And an indica strain tends to be better for sleep than a sativa.
Girl, I'll need to look into THC being estogenic. I had not heard that before.
Stefanie
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Lita, I had horribly itchy skin, red and rashy when I was on a higher dose. I also have burning watering eyes and nose, super sensitive to the sunlight. I'm currently on 5 pills a day, no rash.
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THC being estrogenic, has been the subject of research going both ways. I hate to cherry pick data, so I defer to what might be a well informed source to do so if it warrants.
A good source on cannabis and cancer? The National Cancer Institute:
https://www.cancer.gov/about-cancer/treatment/cam/.../_26_toc
Quoting from their website:
An in vitro study of the effect of CBD on programmed cell death in breast cancer cell lines found that CBD induced programmed cell death, independent of the CB1, CB2, or vanilloid receptors. CBD inhibited the survival of both estrogen receptor–positive and estrogen receptor–negative breast cancer cell lines, inducing apoptosis in a concentration-dependent manner while having little effect on nontumorigenic mammary cells.[18] Other studies have also shown the antitumor effect of cannabinoids (i.e., CBD and THC) in preclinical models of breast cancer.[19,20]
references from above:
https://www.ncbi.nlm.nih.gov/pubmed/21566064?dopt=...
https://www.ncbi.nlm.nih.gov/pubmed/21566064?dopt=...
https://www.ncbi.nlm.nih.gov/pubmed/20859676?dopt=...
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Lita,
While I don't have itchy skin, it's definitely flaky. My eyes and nose are runny too. Some morning I can hardly see as they're so watery.
I do have to say the more cycles I am on X the less HFS I find. That's a good thing.
Amy
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Lita-
I've had itchy skin too, mostly around the collarbone and a couple of unreachable spots on my back (of course!). It was driving me nuts trying to figure out why. At first, MO thought it was an allergy but antihistamines, etc. don't touch the itching, and an elimination diet didn't affect it. Then we thought it might be the Xgeva shot so we skipped a month but that didn't help either. Another look at Xeloda literature indicates itchy skin as a less common side effect. Sigh... If anyone else has a remedy, please share.
Marti
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At my real life group this afternoon, we were talking about X, and sometimes u have to get Rx strength antihistamines.
Also, be very careful in the sun. Long sleeve, breathable shirts help. They have lightweight ones at camping stores that have the spf rating built in. Might be able 2 get cheaper ones on line.
I can really feel the sun do a number on my wrists which aren't always covered up completely. I wear gloves outside, too, and a hat if I'll be out for more than a few minutes.
I hate how my face is all freckled up now 🙁
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My MO must have been listening to this thread yesterday. After emailing him with my SE's since I started, he told me to stop for 2-3 days, then start back up with 3 pills a day (instead of 8), and titrating up. He said to try and go as high as you can without the SE's being debilitating. I'm good with that!
The nausea has really kicked in, Zofran isn't doing much. Hoping he lower Xdose will help.
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MIMI, Zofran is like taking tic tacs. I use medical cannabis for the nausea. It's the only thing that works for me. You should have some decent dispensaries down there. Vaping doesn't last very long, but the edibles keep the nausea away for hours.
You can do your own research on which strains, but i'd go for indica rather than sativa. Sativa can cause anxiety for some, and indica is more mellow and relaxing. Also go for strains with higher cbd because the thc component can stimulate estrogen and also make you high, whereas cbd does not. The bud tenders at the dispensary can help, too.
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Thanks for the info Lita. A few years ago I tried some mj for pain, didn't work, and of course my Pain Doc didn't condone it. And the few edibles I tried tasted awful. But now that I'm gonna be in this for the long haul, with my new dx, I guess I really need to study up on it and try again, for so many SE's. Unfortunately there aren't any docs or dispensaries in my area, they won't let them in the Santa Clarita Valley. I'll have to go to the next valley over and start again. I know they've come along way, and there are so many types and strains, and ways to take it now.
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MIMI, Bahn (sp?) makes a nice dark chocolate cannabis bar, and it doesnt taste too bad. (I HATE the taste of pot, too...it makes me gag.) The bars come in 4 sections, and you only need to take a little piece. I break each section into 3 pieces, so I get 12 doses out of the whole bar. Very economical.
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Has anyone gotten sick in their week off Xeloda? The past two days, I've felt dehydrated and like I might have a bit of a UTI (something I haven't had in years), and also kind of flu-like (hot, cold, shaking at times, worse at night... crawled into bed early without dinner the past two nights). Temp has hovered around 100, so after my local onc's office wasn't much help (referred me to PCP who isn't available or Urgent Care), and I don't feel sick enough for the ER. My WBCs and granulocytes are very high, so I've simply doctored with lots of fluids, Ibuprofen and Vitamin C. I feel better this a.m. (Day 7 off), but I'm wondering if this is some type of withdrawal reaction, and if anyone else has experienced it? I have an onc appt. tomorrow, so will get his input then. When I was on Ibrance, many women complained that their week off was tougher than weeks on, but I never experienced that. Starting to wonder if this what I have to look forward to now on Xeloda.
PS... My Xeloda/Capecitabine is made by Teva. Is that what everyone else is taking, or could there be some difference in SEs if we are on meds from different sources, as I know is true for other meds, like Femara, due to a difference in the non-active ingredients.
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I bet you just caught a bug. At least I haven't experienced anything similar so I hope it's just that. Xeloda has worked so well for me, I hope it does for you too.
Feel better -
Amy
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DLB, that's scary. I've been on X for over a year now, and I've never had that kind of reaction during my week off. I've been light-headed, fatigued, and even had a bit of diarrhea on my off week (easily remedied by Imodium), and my HFS got a bit worse as the X gets cleared out of my system, but never what you've described.
I agree with Amy. You probably came down with a late spring bug. BTW, my X is manufactured by Mylan.
You may want to talk to your MO about delaying the start of your next cycle for a couple of days just to be safe and to get a little more strength back.
Get well soon,
Lita
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Thanks, Amy & Lita. I was feeling somewhat better this a.m., but about an hour ago I suddenly got very woozy and passed out trying to get to my bed to lie down, hitting my head on the floor or wall or something (ouch!). Just emailed my UCLA onc to ask if, in her experience, this could be Xeloda-related, and as I said earlier seeing my local onc tomorrow. From comments to the same question on the Xeloda FB thread, it's happened to others, and dehydration sounds like a factor, so trying to drink more water now. Will keep you posted.
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Goodness, Deanna. I'd think the fainting would call for an ER run.
I've never had any flu- like stuff on or off x.
I did just start my first experience with real H&FS. Mainly feet. Feels like a bad sun burn. Tomorrow is my last day of this round. I've been on x since the beginning of February.
Deanna, I'd say yes to fluids. Maybe even an infusion! Take care.
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Good afternoon,
I just began xeloda about a week and a half ago. I feel like my old self with energy. Will I crash on the week off? I had been on tykerb for 3+ years and it recently stopped working. The fatigue was real - nap every day around 2 Pm or so I would love to be done with the fatigue side effect, but don't want to get my hopes up and then crash. And then I hope it works as well.
Insights??
Thanks
Nel
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Kaption, I emailed my UCLA onc and she said it sounds like a virus. Hoping she's right because I could not deal with feeling like this every third week!
Hi, Nel! So glad you're doing well on Xeloda. I have had some fatigue, but more like time-wasting malaise vs. ever needing a nap. Just hard some days to find energy to tackle my to do list!
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My wife slept really well last night. Back on xeloda starting Wednesday. No idea why she slept for once. She is a bundle of energy today. Good to know it is lack of sleep alone that is holding her back. She does seem to sleep better when she is on the xeloda, than off it. That completely puzzles the Oncologist. He thinks its all in her head, but I don't think so. She isn't fearful or more worrisome during her time off. It's got to be something metabolic.
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Deanna, I love the concept of it being time-wasting malaise. That explains how I feel all the time and lifts all guilt for getting nothing done
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Husband, sometimes I have trouble sleeping on my off cycle, too. During the off cycle, the body is trying to metabolize and clear the toxic xeloda from the system.
Alas, sleep problems plague lots of cancer patients. What I hate is being so fatigued during the day and still NOT being able to sleep at night. So if I need a little nap, I take it.
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Time wasting malaise -describes tykerb perfectly for me. Hoping this is not the case on xeloda - but we will see
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Nel- I found the fatigue worse on Tyjerb. I have fatigue on Xeloda but it was worse on Tykerb.
I have found Xeloda to me much easier in general than Tykerb.
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Dear lifetime friends brought healthy salads and homemade apple pie yesterday for my DH and me. Certainly helped me after these past few awful months. Just in time too. HFS hit hard this week!
Hope everyone has a lovely holiday weekend.
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I have just finished Round 2 of X and the last few days were truly awful! Besides losing my taste for food (most things taste like metal with lemon on it), I have experienced extreme nausea. On day 14 the nausea got so bad it led to vomiting and dry heaving. I take Zofran but it's not much help. Also, I belch like a beer drinking hillbilly and this is new. I am taking 4000 mg/day, 14 on and 7 off. Have any of you had nausea that led to vomitting since being on X? I see my Onc on Wed. So far no hfs thanfully!
Happy Memorial Day Weekend to all of you! I hope everyone enjoys their holiday while remembering those who have died in service to our country.
SusanR
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Was barely able to drag myself to my onc appt yesterday... thank goodness my son was available to take me. As soon as he saw me, my onc ordered 2 liters of IV fluids, potassium, IV antibiotics and several cultures, and I ended up spending 5 hrs in an IV chair... Took 2 RNs 5 tries to get an IV because I was so dehydrated. Not a fun day. Not sure what the lesson is here, except do not let yourselves get dehydrated! I was such a mess. Still feel like crap today, but a bit better. Onc didn't think Xeloda was to blame, but we'll see what the cultures show. Off X until I improve.
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Susan your dosage needs to be adjusted ASAP. That type of nausea has never happened to me. Get in touch with your Onc as soon as you can.
4000 (8 pills) is a lot.
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Deanna,
Glad you checked in. I've been thinking about you. Glad you got help and feel a little better. Take care! Drink up!
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Can Xeloda ladies swim in pools or is it a bad idea because of hfs? I haven't had issues with hfs yet but don't want to risk it. But if one were to consider it, do you guys think it's bad to go in a chlorinated pool? I'm avoiding chemicals as much as I can but I'm also tiredof watching my family have pool fun without me. And I'm crabby because my husband just made all this beautiful smoked food and I'm notsupposed to eat it. Grrrr.
We did see baby Canadian geese today so that was nice!
Hope you all are having a good weekend!
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Girlwithacurl,
I have a pool in my backyard and swim weather permitting. I've not had any problems except my skin is a little drier but lotion takes care of that. So swim and enjoy! It's one of my favorite activities and good for you.
Wanted to add that while swimming yesterday I had a pair of Mallard ducks land in the pool and swim in one half, permitting me the other half...how kind of them. It's was fun to be so close. I only wish my camera were in range so I could grab a few pics.
Amy
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