All about Xeloda
Comments
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Last time I flew I went with the wheelchair option and it was awesome! Nothing like being whisked through the airport at 50 mph. Definitely the way to do it. I also tapped into the wheelchair option when I was visiting a family member in the hospital. It is way to far for me to walk.
I have mets all over my spine, with two compression fractures "fixed" with rods and pins spinal fusion. The newest one is in the Lumbar area and is making my life hell. It's bad enough to be sick, I can kinda handle that, but the constant pain is more than I can bear lately. I think a lot of the numbness and pain that I have been attributing to the surgery may actually be the disease in my bones and a good round of radiation might be helpful. My doctor had been leaving it up to me, when to go for radiation, telling me it can be damaging so I don't want to do it until I have to. I have a new doctor now (I moved) and I see him Monday. This is something we are going to talk about. I figure that with 25 mcg patches of Fentanyl and Oxycodone 20 mg every 4-6 hours, I shouldn't be in tears over the pain.
I'm fortunate in that I'm handling the Xeloda well. My hands are dry and my appetite is way down. And I get the sleepies. But overall, it's treating me well.
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Shetland yes, that was for the wedding. I miss riding my bike a lot in the summer but the real killer is not skiing in the winter. The beauty and serenity of riding the chair up the mountain is pure bliss!
Bonniemen, I get a chair for the hospital too as the place I have to go is down 3 super long corridors like a horizontal Mt Everest when you have a bloated belly and Xeloda fatigue!!
Went and got some CBD oil today for (hopefully) better appetite and anxiety relief. Weird concept to me and I do NOT want to feel sleepy or high but better to try than pharmaceuticals I think.
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Artist, can you ride the lift up and down even if you don't ski?
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BonnieMen, I'm in the same boat as you are. Thoracic spinal fusion, extensive mets in bone and liver etc. and I was on the same dose of pain meds that you are on. Xeloda is starting to ease my hip pain where it was the worst, so I've been able to cut back on OXY and down to 12mcg Fentanyl. I've gone from a 10 in pain to a 6 and 6 is tolerable for me. I also had radiation a few months ago and that has helped some, so maybe radiation is worth a try for you as well. Just lowering the meds dose for me was huge.
Xeloda messes with my GI tract big time and I can't use my finger print to open my phone.....maybe we can all star in a crime movie with no fingerprints!
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The Pink Ribbon Gang!
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Chuck, thank you for that info on eye drops. She has me doing compresses and the systane preservative free in the little vials. She said the meibomian glands are clogged. Then she kept saying the "pores" which was confusing to me. Then she mentioned that I need mucin. I said wait I thought it was the oil I need because the oil glands are clogged. She said everything comes out of there. I have spent hours online learning about the 3 layers and where each layer is produced and she just wasn't making sense to me. I will continue with the compresses but I'm not stopping the coconut like she said. I did it her way had really painful eyes by the evening. I am using baby shampoo with a few drops of tea tree just in case I had too many mites, but I don't think I do. I don't have any crust or gunk in the morning. However, if I use a lot of drops I sometimes have a little bit, so I think the C oil is preventing that. I want someone to do probing or at least express the glands to try to get things moving. Thank you again and I wish you and your sister well.
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Husband, thanks for the info. It's great that she can still have xeloda on the back burner! I was reading another thread where you talked about the oil of oregeno and pretty sure I screen shotted it because I think it's worth trying. I told my dad about how it affected the numbers and he was excited for me to try it out! Weird that after all this time your wife still has issues with feet off and on. I am still putting the coconut oil on and still think it's far better than urea so far. On day 12 and no issues. But that is also from the dose reduction too.
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Hello, this morning I just started my first cycle with Xeloda. Any advice? Thank you
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HLB, I have the drops as well and tried the coconut oil and did a tiny bit of research online in regards to putting it in the eye. One says it's ok, another says no. I have a lube I put in my eyes at night and it acts like the coconut oil, making things blurry, so just keep my eyes closed. Made by Refresh as well.
HFS gets worse as time goes on.
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Has anyone experience elevated liver enzymes and markers on Xeloda, after being on it for a while?
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Ihavebeastcancer: I just finished my 5th cycle of Xeloda. Here's my advice.
. Keep vigilant for side effects. You wont get all and some will be worse for you and others not.
. Keep you feet and hands super moisturized Xeloda makes them v dry and flaky so keeping ahead of that is a good idea. I use Udder cream - which I get in a pot at CVS and also I found a tube of hand cream in Rite-Aid. I also got some cotton socks from Amazon - which are great at night to keep the cream off the bedsheets. Also I make sure I look after my feet when walking (the first round I got a blister and very sore feet which meant I couldn't go on them without a lot of pain for a few days - this was on a high dose - see later)
. I also get nauseous - though that seems to have improved in time - so Zofran has been my goto. This can bring constipation - and its best to keep ahead of that (if you need to) I take a laxative at night if I feel I might need it.
. Tiredness can creep up on you. I find it different to how I felt with Ibrance and aristolzole, I'm less mentally fogged. But I do need more physical rest periods - and take one if I've had a busy day
. There may be other symptoms others get but these are the main ones for me.
. My first dose was high (5pills twice a day tho right for my body surface area) this gave me hightened side effects and my liver markers rose. So my onc gave me an extra few days to recover and I'm now on 4 pills a day. So do report how you feel to your MO. though mine knew I had a bad time because she saw the blood results.
To give you hope, Xeloda can be a great drug and for now I am happy to be on it - despite very pesky side effects. My last scan showed great results - with shrinkage of 50% & 20% in my largest liver spots.
I wish you low side effects and great success!
Sarah
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BonnieMen and Lindalou:
So sorry to hear about the pain from bone mets. My mother is in a similar boat and needs pain meds 24/7 because of bad compression fractures. Started Xeloda + Keytuda trial about 40 days ago in lieu of neck surgery. Scans in a month, so I'm praying we see some efficacy because the pain management in the interim has really been awful. I think she could handle the Xeloda symptoms on their own, but double duty with the pain has severely limited her ability to live her life.
What we're wondering at this point is when it's even possible for her to get surgery, particularly if the Xeloda/Keytruda combo is efficacious. Alternatively, if it's not efficacious, then what ... treatment up? More surgery? Rock and a hard place for certain.
Prayers to both of you for some relief.
Jeff
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Jeff, has your mom seen a palliative care specialist (pain specialist) in addition to her oncologist?
Goldie, thanks for the photo of the nighttime eye ointment. I was mulling over what kind to get and I see that one says preservative-free. So I'll get some.
News flash: Police are warning store owners of a recent rash of thefts. Detectives are puzzled that no fingerprints have been found at any of the crime scenes. These fingerprint-less thieves appear to be particularly interested in awesome jewelry, very soft socks, and expensive eye drops.
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So cute Shetland, I love it!
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ShetlandPony:
Indeed she has. It has been an iterative process and she's graduated onto stronger pain meds that will not DQ her from the study. She's within a month of getting first scans, so I'm sure at that point we can reevaluate everything. Also worried about my dad because he's all-in on a difficult care taking situation; I can sense how helpless he feels. Feels like we're balancing quality of life with best odds of getting to NED.
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Goldie, thanks you are the second person to suggest the refresh ointment so it must be good. I ordered some called lubrifresh that has not arrived yet. It's mostly petroleum jelly. For now I am hooked on the coconut and it also seems to be working really well on the feet. Day 14 and still no problems. It seems to be clearing up my bad toenail too. It's always brittle on the tip and breaks off and becomes ingrown.
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Good thought on riding the lift Shetland. But I sure would miss the thrill of swooshing down that hill. The nausea and fatigue are also kicking my butt. My appetite is nonexistent but force myself to pick away at it. He lowered my dose to 2500 and I get a week break here after tomorrow so we'll see!
That's great scwilly!
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Artist, I do 2500 a day and sometimes I skip either the last day, or the first day of a cycle and sometimes maybe just the first or last dose. I figure it really can't hurt.
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8 months on Xeloda and I’m out. Latest scans show no more liver mets (yay) but multiple new bone mets. So, I’m moving to a combo of Affintor and Faslodex. I believe this may be a relatively new combo. Is anyone on it? Is there a thread for it? I couldn’t find one.
Honestly, I’ll be happy to have my feet back in working order. I use them a lot.
Stefanie
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Stefanie, I looked for that thread too. Interested in what others have to say about Afinitor as well. That may also be my next step. Hope you do well on that combo.
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No thread that I know of. It's a pretty rare combination. I have taken both Afinitor and Faslodex but not at the same time.
I'm sorry about the bone progression, wishing you the best of luck and many hugs.
Shetland, that's awesome! Can I join that burglary gang?
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There are at least two afinitor threads but idk of one with faslodex. Sorry about the progression but great news about the liver! Glad your feet will be getting better too.
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I think we should be able to try our own combinations, with in reason of course. I did Faslodex with Xgeva, did not get long on that. Now its X and Xgeva. I guess the Xgeva is for our bones. I don't think it's a chemo drug, but I could be wrong.
Stef, are you on Xgeva? Maybe you could try the two X's before moving on to something? If not, maybe you should start a thread for that combination?
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I am on Xeloda and Xgeva. Xgeva is not a chemo, its for strengthening our bones. I have had 2 shots so far, but can't tell any difference, but hopefully it's doing something good to my bones.
Don't have any flue like side effects as warned by the nurse.love, karina xx
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My onc told me that there is mechanism to XGEVA the prevents cancer from growing in the bones, as well as reducing SRE.
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HLB thanks for the info. It's good to know that we benefit from xgeva.
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Karina, I hope you are feeling better every day and have a wonderful peaceful Holiday Season!
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So yesterday at work I could not stay awake for anything, kept falling asleep at my desk. Boss sent me home to get some rest and I slept for 13 hrs. Embarrasing. That was day 16, 2nd day of week off X. I need to figure out a way to get some energy. All meds make me tired but this one really does me in. I can't not work. My boss is wonderful and very understanding but still.
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HLB, you might want to ask your doc about a 7 days on and 7 days off schedule. I am on this schedule and find that I still have that tired feeling and the hand and foot issues but just as it starts to get rough I am off of the drugs for 7 days and recover very quickly. Hmmm, you might be able to start the cycle on a Sunday and then by Friday when things start to get rough, you have the weekend to start to feel better and then back to work on Monday on your week off.
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My wife has been on the 7 days on and 7 off schedule as well. It is definitely doable. She is still very tired. Also, according to her latest PET/CT scan, one month ago, her numerous spinal mets are in remission or outright gone. She has one stubborn met in her hip bone that is static.
MikeW.
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