All about Xeloda
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Nicole, I can't provide the document. However, I can tell you that my Sloan-Kettering (MSK) MO in NYC put me on Xeloda, 7 days on and 7 days off in February.
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Thanks I sent a message to my MO basically begging her to consider it...she already had agreed not to do the max dose for my height and weight which is 2600mg per day I am starting at 2000mg per day...but I want to do the 7 on 7 off...I just do... I would be willing (which I told her) to eventually try moving up especially if there is no change or progression..but why start out with possibly more side effects if I do not need to??? I sent her the link I posted above..but I would really like something specific from MSK...
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Liveinthepresent...I have been on Xeloda for 22 months and had less of an appetite at first. Now it has come roaring back.
In 2004 my liver was filled with large tumors, and Gemzar & Herceptin cleared them out in 9 months. If you have only one small lesion, with no other sign of more appearing, you can get Radio Frequency Ablation (Unless something newer has come along). It will easily zap out mets that are 3cm or smaller.
There are a lot of chemos that do a good job on liver mets.
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HT is Hormonal Therapy. Good luck with the new meds. I love being able to take a pill instead of infusions. I had to work with my doctor on the dose before we figured out the maximum I could take without bad side effects. I'm interested in how many have problems with appetite. Another interesting thing is that the doctor warned me that diarrhea was very common but I have problems with constipation instead. I need to take Metamucil while taking X.
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Denny123-I have been on X for 24 months and keep losing weight because I feel very slightly nauseous and have no appetite. Also, I get full very easily due to a small amount of fluid in my pleural area. It pushes on my stomach. I take Metamucil for constipation due to X and this is filling too. My doctor does want to try the procedure you suggest if he thinks I won't have more lesions in my liver-it is only 1 cm. I see him in one month.
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ughhh you just let my hopes down...constipation is my issue and I was hoping since X causes diarrhea I might now be normal....
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Nichole, Don't think that you'll have all the possible side effects. I started 8/21 and the extreme fatigue is my biggest issue. Oh, and sorry I have constipation too.
I did my first 2 cycles 21/7. Then I switched myself to 7/7. At my next appt I told the NP. She was ok with it. Truthfully, if it wasn't for being tired, I wouldn't know I was on it.
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Nicole, this is your body, your doctor works for you. If you want to do 7/7, do it. Like Snooky said, don't assume you will get every SE there is. It reacts to all of us differently.
I have no fatigue, or nausea and I'm "regular".
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Liveinthepresent, welcome! I have not experienced any change in appetite at all.
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Liveinthepresent...right. At first it was suggested that I get the RFA for the one lesion. But a follow up scan at a better hospital showed multiple and rapidly growing mets.
So systemic chemo was the way to go. 1 cm is so small and that is good.
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Living...oh yeah...I get a bit of nausea if I don't eat every 3-4 hours, so that many meals does build up the weight for me.
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I tried everything and found Metamucil fixed the problem with constipation.
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Denny- I have always had a sensitive stomach. I will try eating several small meals as you suggest. I don’t like anti-nausea drugs because they increase constipation and make me sleepy-sigh..
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Its very supporting to read the experiences and know ahead what to expect from X. I met my ONC on Friday and decided to do the X, 3000mg per day. I requested her to one week X and one week off but she disagreed on that since my cancer is aggressive and chances are high that it might recurred soon. I have my liver surgery on Dec 5th which I am bumped about because i could not get the earlier date. I had appointment with my liver surgeon on Oct 31st and the only date they could find was Dec 5th. I am scared because as of now it is only one tumor in liver. I hope that it might not spread to other parts by the time we get to do the surgery.
Nicole - I agree with you on constipation part. I always used to have constipation problem so when i heard Diarrhea can be possible side effects i was okay with it but now since in the thread constipation can be the SE, I am :-( but like other ladies said the SE are unique to each person so finger crossing :-).
Take care ladies
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Live...I was on Kadcyla for 4 years and lived on the "horrible" diet of buttered noodles and white potatoes for the nausea. And I even attained NED for a few months. So that is my further proof that our diet really doesn't make a difference. We have to eat what we can tolerate.
And yes, I ate buttered noodles every 3 hours....LOL.
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Denny-sounds like a very creative answer to nausea! Not sure it would work for me except for the every 3 hours part! I agree that you have to do what works.
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Naesha-what kind of liver surgery are you having? I have one tumor in my liver and they did a biopsy-haven't got all the results yet. I have just started on Aromasin-a hormone lowering drug as well as X. Previously my tumors were in my lungs and bones so this is new. My doctor wants to try Aromasin to see if the tumor shrinks or goes away or anymore appear. When I started on X 2 years ago-they started me on the high dose but my feet reacted too badly and they had to lower the dose to 2000 mg a day-one week on and one week off. The doctor told me not to try to tough it out because damage can be permanent to the feet and was very careful to not let it get to the painful stage where you have trouble walking. I have some numbness, they can get hot or cold and some redness but no peeling or pain. Someone else recently reminded us that it is our body and we need to be part of the decision making-not just do whatever the doctor says (within reason of course!)
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I just started cycle 2 this morning and am taking 1500mg in the a.m. and 1500 mg in the p.m., two weeks on, one week off. I'm hoping it will stop all the partying in my liver! It's like Vegas in there!
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Well I will be delaying starting X this Friday for a week or 2...I found out today ovaries are coming out this Monday...
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Nicole-Can I ask why your ovaries are coming out? Is it to lower your hormones? I still have mine is why I'm asking.
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Well Kattysmith you made me laugh when I visualized your Las Vegas party!
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@Liveinthepresent, they found a 2cm tumor in my liver i guess its near the rib area. They found this on June but since it was too small my onc could not decide if its cancer or not. So we waited to let it grow i guess for three months and back in Oct we did the MRI after my TE were removed and found that it has grown in size from nothing to 2 cm. We did the biopsy and turned out to be TN again. So immediately scheduled to Liver surgeon for the surgery process, three options were given : Microwave ablation, giving the chemo through incision directly to the tumor (one day process) and third was surgery. We chose to do the surgery. Since the surgery has to be done by two surgeons so syncing their schedules and making sure the backup equipment were ready the surgery is now scheduled on Dec 5th. I wanted to get it out asap and i requested the same to the doctors as well. I was more bumped when the nurse called and told me that the surgery might be on Nov 21st so i was hoping to get it on Nov 21st but unfortunately not. If i did not know about Nov 21st then i would be so bumped :-). Now I am scared that within three months the nothing tumor grew to 2 cm and its already been more than a month since i did my scans. So I cannot be sure on if the tumor has grown in size or spread to other parts of liver.
My ONC wants tried my case for one of the clinical trial that includes chemo plus immune but my case was not picked so we decided to get second opinion if there are more clinical trials in other cancer center. Turned out there are not enough clinical trials for my case or conditions or situations so the second opinion ONC told me to go on X. So here I am planing to start X soon but it has be decided by my ONC to see if i can start before or after the surgery.
At this moment i am finger crossing and praying that the tumor hasn't grown big or spread to other parts. The liver surgeon was saying that its a good that there is only one mark in liver, not sure whether to be happy or not in that case.
I was doing okay when i was first diagnosed with BC on May 2018. It was Stage IV, TNBC and met to my lymph node. Though they were talking about the recurrence possibility that time but i did not give much thinking to it because i used to think that this will be the first and last and i will not have any recurrence at least not this soon. I think being always positive will not make things go away :-).
Kattysmith, yep Vegas party :-)
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Living....I have been on Lupron and my numbers just are not where my MO would like them to be. When my Ibrance/Faslodex/Letrozole stopped working and I stopped the Faslodex and Ibrance...I was still taking the letrozole for like a week (and still taking lupron) the Letrozole was actually making my ovaries want to ovulate I spotted...my MO and the Oncologist/Gynecologist both said this can happen. As soon as the Letrozole stopped I stopped spotting. To be honest I am glad to get them out I have no need of them....Plus...just one less place for the cancer to settle into...
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Naesha-good luck! They had to take a large hunk out of my liver ...sections 7 & 8, and it wasn't bad at all. And after my surgery, I went on Gemzar and Herceptin for all of the other numerous tumors. So if you should get more mets, chemo should get rid of them.
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Just an update... I will start the Xeloda now on the 25th...500 mg in the morning and 500 in the evening for 1 week (since I will be post op) then I will go to 1000mg 2 times a day...and my MO agreed to my request of 1 week on 1 week off
Side note please pray I have an MRI Saturday of left femur been having pain in the back side of that... also have CT full scans for base like in 2 weeks.
I will cross post.
Thanks ladies
Nicole
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Nicole...prayers going up for you! That should be an easy enough dose, since I am on 2,000 a day. It is tolerable.
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Awesome Denny thanks! I am gonna be praying I get more than 4 months on it (like Ibrance)...and praying I get a LONG run like you !!! You are the inspiration woman!!!
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Thanks---Just had my CT scan today. Will find out in a week if I am still NED.
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Nicole-I hope the X works for you. Glad your doctor is agreeing to 7 on and 7 off. It has worked for me for two years. Nothing is perfect-be nice not to take anything but that isn’t possible. Hope your surgery goes well.
Denny-hope your CT scan is good. How often do you have them? My doctor sends me every 3 months. Used to be CT scans and now I get PETs. It’s interesting to hear different treatments for similar issues. It’s definitely not an exact science.
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Live....every 3 months for me, too. I used to get PET's but since I attained NED, I can get CT's. Sooooooo much easier! How I hate to sit still for 90 minutes. I always sneak my cell though. After all, the scan doesn't include my hands.
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