All about Xeloda
Comments
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sorry that my desciption "clogged the liver" was bit simplified if not inaccurate. Lol
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I think clogged the liver was pretty much what happened. I found one case report of something similar, but that was it. Not a trace of reports that xeloda could be causing this, but other chemo's have caused something similar, rarely. I think it was too much change, too fast, that brought it on. I imagine the rapid death of say 90% of the cancerous tissue mass, and the body's reaction to having all those dead cells disbursed through the liver to deal with and dispose of. It must have brought on inflammation, immune response, white blood cells, etc. All that I theorize caused obstruction to the blood flow through the fine blood vessels that pass massive amounts of blood flow through the liver.
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QUESTION - Anyone ever been on Xeloda and Ibrance at same time? Know if it can be done even for a few months?
I reviewed my scan from Oct 2016 to present. The Ibrance knocked back activity of definite mets in liver. Then clear for months but when on Xeloda the lesions were there and grew. BUT the Ibrance also had helped w many cancer nodes and masses of nodes in chest, bronchus, supraclavicular. Then stopped. Xeloda is what got rid of all evidence of disease in those, just not liver at all.
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Goods news today. LDH went down over 200 points since Monday. This is also my week off. They want to see if it's a trend from Xeloda. My husband asked if Xeloda was harsh on the liver and the answer was yes. I take 1500 in the am and 1500 in the pm. Hopefully my liver can handle it.
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Bluebird, I sometimes wonder the same thing about trying different combos because I have lots of leftovers of certain things. I have probably at least a whole bottle of ibrance from forgetting one now and then, and a new bottle of letrozole that I was sent to take with Kisqali, then the K was not approved by ins. Pretty sure I have some aromasin too.
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Diana that's awesome!
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Even though I have two naphostomy tubes the past month I've had to pee normally too so I knew the chemo was doing something good. The past two days that hasn't happened so now I'm nervous that the cancer is on the move again. I have worked myself into a migraine. I hate the head games this dam cancer does to us.
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Bluebird, there is a lady that post on here from time to time. She lives somewhere in the far east, like Malaysia. Her oncologist had her on xeloda and letrozole at the same time. I know that's not the same as Ibrance, but it has some similarities as Ibrance blocks some sort of "work around" that cancer has for growing despite hormonal suppression.
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Bluebird, I keep thinking the same - why not do Xeloda for a few months, then switch to Ibrance/Letrozole, then switch back to Xeloda - the side effects are different, so it would provide time to heal one side effect while the other side effect comes back, and like you say, the medications seem to hit different things..... but - noooooo says my oncologist - it's not part of the protocol - grrrr (like, I have metastatic cancer, I think - why not let me experiment a bit.... oh well).
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Deb, I agree! My onc does not deviate from the standard of care. It's so predictable no matter what I say I know h will nix it, so I just do what I want sometimes. Of course I can't take anything he won't prescribe, but I went to a holistic Dr and got him to prescibe it. Also didn't want me to get sbrt but I thought it was worth a shot so I did it. otherwise it would make me mad that he was controlling my life and my blood pressure will go up. Not healthy! Lol.
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HLB - so glad to hear you just do what you want sometimes - it's not just me! I know I drive my oncologists crazy sometimes, but I'm generally all smiles so we seem to get along okay. Yeah, I hate that feeling of having my life controlled. Just googled SBRT - looks very cool - do you think it helped?
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Well it helped the three spinal lesions that were radiated. At the time they were the only ones active, but it was only a few months before more Mets popped up. It was more intense and more precise than standard rad, and it kills the lesions so it will most likely never come back. So I guess it helped in that way. The T6 was competely replaced by tumor, so it's probably good that I got rid of that one. The guy is trying to cure people with limited Mets, knowing that it probably won't happen for most, but I thought if I was really lucky I might be able to stay that way for a few years.
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Thank you for the info and responses. I am still researching. HLB and Deb in Vancouver - I am thinking of doing my own think, yes I am. But doctors do not want a clue that you are off their course. It's like, hey, I want to live more than they want me to live so I will be careful. I am thinking of the Xeloda w Femara or Xeloda w Arimidex. Or even w Faslodex. But I am so uncertain.
Off for a week, begin again Saturday. Meantime 4 dr appt in 3 days. A lot of answers and plans to be made.
Treating myself for radiation induced and lupus aggravated pneumonitis. Wish me luck. Something has to give.
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It will be a month Friday that I stopped the A/C and not one sign of my hair growing back. I'm getting worried that it's not going too. I really have shit for luck !
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I think the hair will come back. It was a lont time ago and not the same thing, but I had AC and then taxol. The hair started coming in one week after I stopped taxol. I thought it was really weird because I was getting it every 2 weeks and never a sign of it coming back. Someone actually pointed it out to me. "Hey, your hair's coming back!"
Good luck Blue bird. It's very hard to know what to do. I remember you from the alt section. So much info it's overwhelming. I just started re-reading my Walter Last stuff. Just to see if there's anything I'm not thinking of. I wonder how Abigail is. Remember her?
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Well ladies, I have no luck. On the 14th day of the cycle my feet blew out in blisters. AGAIN! Note to self -- do not get on airplane on the 13th day. Twice that's caused blisters.
Funny enough, last cycle I was on airplane on the 2nd, 5th and 11th day with fewer problems. Arrgh.
So now I'm in Copenhagen with blistered toes, looking at a four-hour foodie walking tour. And I'm going to go. To hell with this. I've got cushy shoes and I'll try to walk on my heels. Advil time. I declined to take the last dose of X so it's been 28 hours since the last dose. Should heal up, right? Right?
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That stinks! I hope you have shoes with lots of cushion. I don't have this problem yet but I was wondering if I could cut out some insoles with foam rubber. It's one of the things I hoard to make stuff out of.
I am having a problem with my eyes that I think is dry eye. It always feels like something is in my eye, scratching it. It started with pink eye, which I was able to clear up quickly with borax, but the scratchy feeling is still there.
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Just got my labs back. For the last 2 months, I've been doing 1 pill (500mg) 3 times a day with no break. My TM remain the same, they came down just a few numbers. But that's better than going up!
LFF, sorry you have to quit Madame X. 5 years is a good run. My onc told me it's usually good for a year. I am at 3 years on X. What are you moving on to?
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Goldie - why did you switch to three pills a day with no break? I'm doing three pills twice a day with the one week off. Just started my second cycle.
We have a cruise planned in December and haven't figured out how I will get my pills yet as we will be gone for three weeks. My week off is the week we are actually on the cruise but will need them the day after and we are driving back from Miami. Any ideas
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Diana, I just saw somewhere on this thread about the dosage I am doing. I don't mind it at all. I also find that I don't necessarily have to eat when I take just one pill. I also do MMJ, so not sure which is working! As for your prescription, call whoever fills it , call and tell them you need a vacation supply.
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Goldie - what is mmj ? I will ask about a vacation supply. Hopefully the insurance will cover it. Not sure what these pills cost.
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They are VERY expensive, $1500-$2000 per bottle. If they won't give you a vacation supply, can you have it sent to your destination?
MMJ is Medical Marijuana
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Goldie, I'm impressed with your dosing creativity. Is that something your onc proposed, or was it your idea? Do you know of anyone else doing it? The past two months, I've had some pretty significant HFS in spite of being on a low dose, so have been exploring alternative dosing options, and I'm really curious about yours because it lowers the dose while maintaining a higher monthly dose than some other options.
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DLB, it was something that someone posted on this thread. I'm sorry, I don't remember who it was. I see my MO tomorrow, he was curious as to how it would work also. Like I said, I have been on X for years now, so my time on it could be running thin. Also, it just shows in my TM's, which I know a lot of oncs don't do because they are not reliable. For me, they are. Of course nothing tells it like it is like scans! My onc doesn't jump on those, mainly because I feel so good.
I'm going to ask him if it would be ok to take a week off. Of course he really doesn't know! So I may just do it anyways.
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DLB, here is a post I found from Bluebird-DE. Not sure if it's the one I originally saw or not.
Pamji - Thank you for the details - especially the London teaching hospital limiting doses to 2000 / day. Very interesting. I read of a woman with BC then later she had brain mets being placed on 1 pill 3x a day and no breaks, she recovered nicely, a government study. My goal is 1500 at night and 1000 in the morning. If that will work once NED. Notable is the TM reduced well when I was on the beginning cycle dose, Started at 1 pill 2x day - 2 pills 2x day for 3 days - 3 pills 2x day for the rest of 14 days. And the TMs dropped.
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Thanks for that additional info, Goldie. I'm on just 2000/day (1000 + 1000), so was a bit surprised when my onc questioned if I possibly needed a dose reduction, and told me she actually has patients on slightly lower doses than mine. Of course, I'm terrified to rock the boat, but gathering every bit of info' I can to evaluate all possible options. Hopefully, I can simply calm down the HFS, but if I need to tweek my dosing, I want to be sure I've explored all the options.
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Dianarose, the other thing you can do is ask your onc to prescribe more pills for the month prior. That will give you enough "spare" pills for vacation. My onc prescribes 6/day but I only take 5/day. After three months I have enough for a spare cycle. And it gives me flexibility.
So the foodie tour was fabulous and my feet only hurt a little. It's two toes -- they are now purple. I have new running shoes, they are cushy as anything. But the tows now hurt, sigh. Time to keep them up for 12 hours -- should help.
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Pajim - that's a good idea. Will be doing the math to see what she needs to up each cycle so I have enough for vacation. Thanks
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Goldie- they are trying me in TDM1 otherwise known as Kadcyla.
My biggest concern is my heart function as it is similar to Herceptin, which I could only tolerate fir about 8 months.
Best wishes to all of yoy
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i wish you great success leftfoot, and that you can tolerate your new TX.
I had my blood tests and MO visitToday. My liver tests (act, ast, alkaline phosphate) were all raised. Akso my bilirubin was 1.6 - and I’ve never been over 1.1 and was .9 in last times test (where I was on a hight X dose) . My MO was concerned and so I had an ultrasound straight away. She was concerned anout a blockage, but thus didn’t fund any. So I’m repeating the blood tests next Sat, to check I’m good to go back on Xeloda. I have had some sllight liver area discomfort but I’m hoping this is the X doing its job (I had similar just before a good scan whilst on Ibrance)
Unusually, I was fasting because my Primary care doc ordered a glucose test. I’ve since read that this might have an upwards impact on the bilirubin levels.
Anyone else come accross this? Also - how are your other liver tests been?
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