All about Xeloda
Comments
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Mel I also started with 4000 but couldn't tolerate the hand/foot disease so I'm down to 3000 and doing much better. Hope you won't have to and get a great response from it.
Aurora
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Hello Everyone,
I just started X this week, 1000mg twice a day flat dose (so equals about 500mg when adjusted for surface area). Onc let me start with a lower dose because I've been extremely fatigued for 2 months (anemia). I failed Ibrance and faslodex. I have anemia that won't resolve - bone marrow biopsy revealed that breast cancer cells have almost completely replaced normal bone marrow (only other involvement is diffuse bone mets).
I just stopped working, so I hope that X works and gives me some time feeling better. I've learned a lot from this thread, so thanks for all you experiences and wishing everyone well!
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Hi momallthetime, yes, I was taking Xeloda on it's own for 4 cycles. Sorry to hear Navilbine did not help your daughter. Good to hear it's easier than X. We'll see. I sure hope it helps me and on it's own too.
auroaya, well, you must have been in the 10%-to 29% bracket for a cough SE from Xeloda. I'm thinking that is what happened to me. Do you still have the cough, wheezing? I'm been having this now since Nov. 1st, it's just so draining and taxing on my body. Also good to know you have the power port and have been for three years with no trouble.
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Good great news from our visit to the oncologist yesterday. My wife's tumor markers continue to fall, and her CA-15 is now down to 25. That's from a peak of 449 back in April. The oncologist wants her to at some time switch off of xeloda and go on something less hard on her blood counts, such as an aromatase inhibitor. He's also looking into getting her on palbociclib, if we can get access to it. Personally I am reluctant to have her go off something that is working, and continues to lower her tumor markers every cycle. He is good, and leaves the decisions to my wife. In two weeks she has an mri, so we hope to see improvement, or at least stability.
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Timothy- that is fabulous news. So happy for you.
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Leftfoot. That's amazing!!!!!! So happy for you. I wish it had worked for me longer but glad I got 10 months on X
Bab
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Kim, so sorry about your bone marrow. That totally sucks. Hope X helps you.
Tim, great news for your wife. I recommend staying on whatever works for as long as possible.
Happy Thanksgiving day to all of you. Resting a bit b4 I start baking pies and pumpkin bread.
Lita
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Yes, we can beat the big C!!!
Congrats Tim and left foot!
I'm so happy for you guys, I have scans next week and I hope I will be sharing some good news as well.
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Thanks all, and best wishes to everyone. Enjoy a happy thanksgiving.
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Hey all. I finished taxol at the end of September. PET last week showed new mets in shoulder muscle. Doc has me on Xeloda. I started the xeloda 4 dys ago. A little nauseated, a little dizzy. Weird se, my scalp left front aches. Huh? Oh, I forgot to add that my body aches and hurts pretty much all the time, but that is not new. I told doc I would not do chemo again, but he said the xeloda would make me feel better so I can have some fun and go places!
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Timothy, great results!! I am of the thought that if it is working, stick with it as long as possible. One thing to consider if your wife does opt to switch treatments - Ibrance causes low white blood cell/absolute neutrophil counts, typically much worse than what Xeloda would cause. I have low WBC on Xeloda but it is minimal. On Ibrance, I was always hovering just above the counts where it becomes dangerous, as are most patients. It is expected. (On the flip side, the benefit of Ibrance is that the low counts are the only significant side effect.)
Articat, welcome! I hope Xeloda does wonders for you.
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hang in there Artiecat. The first few cycles of Xeloda are the worst as your body adjusts to the new medication. And if it doesn't get better you can decrease the dose or change the way you take it (14 on 7 off or 7 on 7 off).
I hope you take a turn for the better soon. Xeloda has been a very effective killer of cancer for many of us.,
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Articat, I have only been on Xeloda for 6 days and I feel your pain. I too have had some nausea, but I also had it on Ibrance/faslodex. My back muscles and back have been hurting and today it felt almost flu like. I pray we both find relief soon and this drug works for a very long time!!
Happy Thanksgiving Everyone!
Robin
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Thanks all. Just whining. 5 1/2 yrs ago I had a monster chemo...was off work for 8 mos and barely remember any of it, so this is really not much. I am tired of hurting all the time. I hate taking the pain meds - got a medical marijuana card and that does help. (I live in CA). It took all my courage to go for that...at 69 y/o never done any drugs (I know for a kid of the 60s it is surprising, but I wanted to be an opera singer didnt want to hurt my throat!)
I used to be a hospice social worker - I dont like being on the other side!
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Aurora, thanks for your encouragement regarding Xeloda dosing. Hopefully the higher dose won't be a problem.
Good luck to you!
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Good morning all,
Just a quick note to say hello and introduce myself. I've been a faithful follower of the bone mets thread since joining BCO in 2013. Dx with extensive bone mets shortly after my BMX. The day I've dreaded occurred just 10 days ago; a spot on my liver, small but spread nonetheless.
I've been offered IV chemo, Tomoxafin, or Xeloda so I'm choosing Xeloda. I'll start after my DD2 wedding December 10th. I haven't read up on this thread but will do so soon.
Just want to say hello to those I don't know and hopefully get to learn more about X and hopefully have minor SE. Thank you for your participation in this thread and for sharing your personal experiences.
Amy
PS I dont know if Ibrance worked for me or not - I had a scan in September 2015 which showed Femara stopped working so after 10 rounds of radiation, I started Ibrance and Faslodex in January, 2016. In August I had additional progression but bone only, then I had to take a break while preparing for hip replacement surgery which I had in October. Then in November a scan showed actually two spots on my liver which is why we are not going back to Ibrance.
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Hi Amy,
This is day 3 for me on Xeloda. My symptoms mirror Robin's. Nausea, back pain and feel like I have the flu. This should get better with time.
I wish you minimal side-effects and good results on this treatment.
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Hi Amy and Mel my other Xeloda Sisters!
I started on Xeloda with similar side effects but after three months on this therapy most of my side effects have settled down -- especially the hand foot syndrome. I religiously use bag balm or coconut oil with gloves and socks every night. I found continuing to walk four or five miles a day doesn't seem to affect my feet as much as just standing still. Ditto for holding something hard for longer periods of time (like knives or tools).
My tumor markers have been relatively stable -- but we can't tell if that is because of the radiation to my bone mets or because of the Xeloda. This next blood test should tell the tale. I feel a bit backwards: most women seem to come to Xeloda after experiencing progression on Ibrance and Faslodex. My oncologist wants to put me on Ibrance and Faslodex after we have determined that Xeloda is not working for me. This is all so confusing! A second opinion recommended Aromasin and Affinitor as a next step but reading the side effects of that combo was a little more scary than the Ibrance and Faslodex combo. Any advice would be welcomed.
Kimberly
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Hi Kimberly,
Wow, you walk 4-5 miles a day....and in Minnesota no less! I will take your lead on the foot/hand treatment. Thanks for letting me know by 3 months most of your SE's were gone.
Your oncologist knows what he is doing giving you the Xeloda first. I failed the Ibrance/Faslodex quickly. I was disappointed, as the side-effects were minimal compared to Xeloda. At this point, I need something to work on my bone/liver mets. I just found out I am resistant to the anti-hormonals I will endure the SE's if it is successful!
May you have continued good results with this treatment! Mel
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Kimberly,
We've had a pretty decent fall so far, with above average temps allowing quite a bit of outdoor exercise. I'm grateful we've had little snow as i'm still recovering from hip replacement surgery so avoiding falls at all costs.
I'm happy to hear your SE have stabilized.
Mel, arggg, feeling fluish must be terribly draining. I know that feeling, as I had a thyroid condition in my 30's that mimicked the flu for 6 months.
Well the closer I get to December 12th the more nervous I'm getting. But if Xeloda can keep me alive and provide a decent quality of life, I'll be happy.
Thanks for your experiences - my best wishes to you for minimal SE's and a great QOL.
Amy
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Kimberly - - My MO started me on Xeloda first, too. I'll go to Aromatase Inhibitors once X stops working. They had to reduce my dosage twice because SEs were so bad. I still get diarrhea after day 3 of each cycle (guess I'm just sensitive that way, ha ha - boo!). My fatigue is better and so is H & F syndrome. I do have back pain but not sure if it's from my bone mets, degenerative arthritis or the X.
Lita
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Hi Chicas;
I hope everyone is doing fine with good results.
Unfortunately I'm have progression on my liver and lungs, I think I will be switching treatments. I don't know what comes next.
Cheers
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Hello all! I am on my week off after doing my 2nd two week cycle but I'm ready to quit! I'll rather be in iv chemo and loose my hair again rather than having hand-foot syndrome which in my case also affected the back of my knee because I took radiation at the same time I started Xeloda. Walking is hard, I have a blister on my left "good" hand (my right one is useless for non-cancer reasons) so grabbing to the walker or the cane is painful on the blister. I was ready to graduate from physical therapy and start walking with a cane and now this. The blister behind my knee burst so it's raw skin, I can only be relatively pain free laying down. My rad onc prescribed a cream for the blisters and my PT came today and since I cant do therapy under these circumstances she helped me dress the wound. I did talk to my md onc nurse and I explained the H/F syndrome is getting worse despite the doctor reducing the dose on Xeloda so the nurse said she's going to talk to the onc to see what else can be done.
I understand that as long as I keep taking the Xeloda the H/S will not go away so that's why I'll rather go with IV chemo.
Feeling exhausted.
Aurora
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Aurora, Geez, I feel terrible for you and very sorry to hear X is so rough. I wish I could help.
Amy
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Aurora: SO SORRY about X's wrath on you. I found my Xeloda SEs are worse on the weeks I do Zometa infusions. It's VERY hard to do Xeloda for some women. I have lost pretty much all the feeling in my finger tips, and I'm losing toe nails. I can't make a fist or open jars, but it's the price I have to pay. Because of spinal mets and mets in muscles adjacent to spine, MO does NOT want me to do IV chemo unless we absolutely have to. She doesn't want me to be dry heaving and puking as it will really aggravate the back (and I'm dealing with enough pain already).
Maybe you can take an extra week off? Also, try 7 days on, 7 days off. That helped me a lot.
(((Hugs to you, my dear)))
Lita
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anyone else have a hard time regulating their temperature while this drug?
With the weather change I can't seem to get warm. Funny thing is I don't ever really know how cold I am until I start to thaw out as I have lost some feeling in my toes and fingers.
Just curious. You would think I'd know these these things after 4. Year
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I'm always cold on xeloda...in the summer, everyone was ruNing around in shorts and tank tops and I had two sweaters on.
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I'm considering starting Xeloda, but I have lymphedema in my left arm and hand. I wear a compression glove most of the time. I saw that to help prevent the hand and foot syndrome, no pressure should be put on the hands or feet. Has anyone else taken Xeloda while treating lymphdema?
Thanks, Amy
dx: Original breast cancer 2007-Stage IIA Mastectemy, TAC chemo, tamoxifen, Arimedex. ER+, PR+, HER-
2016 ILC spread to bones, duodenom, optic nerve. Feb 2016 Ibrance, Letrozole. August 2016 Abraxane.
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Aurora, I feel your pain! I am on my 7 days off after one cycle of 7 days on. I am having extreme pain in the long bones of my legs and arms as well as hips and shoulders. My dose was reduced to 2000 mg a day.
I'm also freezing all the time like some of you ladies. So far this is not been a great med for me.
Has anyone else had the bone pain like I am having? Thanks, Melanie
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I was diagnosed with lung mets at the end of October and since I didn't qualify for a immunotherapy clinical trial, my onocologist is putting me on Xeloda starting this week. I've been reading everyone experience but my regimen is a little different. Three pills morning and night-daily dosage is 3000, but I'll be 2 weeks on then 2 weeks off. Is anyone doing this timeframe.
Very stressed out and hoping in helps with the orange sized tumors in my lungs.
Thank you in advance. Zoe
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