All about Xeloda
Comments
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All the comments about Ibrance not working as a later-line tx make me skittish... my onc says that is where I'm headed when X (my fourth line so far) fails me.
Hopefully something better will come along sooner than later.
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lulu,
I see and hear reports of Ibrance working for some women as "later down the pike" treatments. I think the disappointment that I am sensing from my doctors is that they really thought it would help a greater percentage of people based on the trials. Real life and trial life are two different things. I sure wish that it had worked for me, but alas, it did not. However, it is possible that the Femara wasn't pulling its weight. Both agents have to do their job for the whole thing to work.
*susan*
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Interesting, Susan. Is Femara always paired with Ibrance? I've already taken Femara, for 18 months; it was my first line over five years ago. I wonder if I would be able to take it again.
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Babs, I don't understand the reasoning for doing a bone biopsy. Since they already know you have bone mets?
Hi Vivian, and welcome. That's a pretty big list of creams with Urea. I ordered some recently, waiting for it to arrive. My hands feel like they have been burnt with hot steam!
Lulu, I did try the 7/7 schedule and after doing, I think 3 cycles, my TM's went up. Not sure if that is the reason or not, and a new spot in my groin. I agree that the 7/7 was much easier. Remind me how many pills you are on? My onc will also put me on Ibrance when X fails.
Myra, good luck with the rads, but sorry you have to go there. Is it for the skull or bones?
My second week on, with 7 pills has been brutal! I start my week off today. I'm not going to live like this. Diarhea that is like water (you don't dare try to pass gas), double over cramps, no appetite, hard to even get food down. Next cycle, I may try 7 pills for the first week, and 6 for the second week. Or….do 7 pills for a 7/7 schedule. Currently not enjoying my dance with Madame X.
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Hi everyone,
Just got out of the hospital and still too exhausted to really catch up on this thread, but I am thinking of you and praying for you all as I know Xeloda can be very challenging. I went in for 1st (palliative) taxol last week (Xeloda failed me), but I was in rough shape and had to be admitted for a week, which did me a world of good - calcium leaking into bloodstream, needed transfusion, got radiation and taxol and finally now home with my family. Am now on low dose of morphine which is helping with the spine/rib met pain.
Hummingbird, sorry to hear of your trouble, and I know you have other worries with your mom's health which makes things even tougher, so I am praying extra prayers for you and your family. The morphine was binding me up badly, but now I take a miralax pack in a cup of water with lunch if needed, which solved the problem completely, so maybe it could help you. My first taxol was not bad (unlike in 2008, it was low dose, it will be once a week for 2 weeks on, one week off) and I think the only SE was tiredness, but I've been told I will lose my hair in 2 weeks (hope I keep the eyebrows and eyelashes, that would be a plus). I hope you have minimal SE's. The doctor prescribed compasine for nausea, but I think my nausea is from the morphine or dex, not the taxol - compasine works for 6 hours and so far it has helped when morphine or dex gives me nausea, so keep it in mind if needed.
We are now just trying to set up some comfort care at home - it's so hard just getting an answer in writing as to what care insurance will cover, but we need these questions answered since I want to minimize the stress later on my family. I came home from the hospital thinking I would be on "palliative care" but am now trying to get an override on my insurance so that I can have the palliative taxol or other palliative treatments while still getting the benefits of hospice (i.e, a hospital bed quickly which I badly need for the spine and rib pain so that I can get some sleep at night as I did in the hospital).
Good luck to everyone starting and continuing Xeloda, and those who are moving on to other treatments, I am rooting for all of you, stay strong!
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Holly, I am SO sorry to hear of all you have been going through! Glad that you are home now and getting some relief. This is a tough beast we are dealing with! Thank you for the prayers and for thinking of me and my Mom even with all you have going on yourself. You are so kind and caring. I will be on Taxol too - 3 weeks on 1 week off - schedule. Second infusion is tomorrow.
Good Luck, Holly. I hope you get that answer very soon from your insurance co. as far as palliative treatments at home. You need that hospital bed! You need sleep! Best wishes. I will be thinking of you and praying that you continue to get relief and continue to improve. Please keep us updated.
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Goldie, are you taking Immodium? I know the diarrhea can be bad. And try small meals. I know, it may not help much. I also had bad diarrrhea even when I drank water. But you need to make sure you are not getting dehydrated. Please tell your docs. For me, I had to let them know if I had more than 7 loose stools a day. I was in a clinical trial and BOTH drugs I took concurrently caused the Big D. But Immodium constipated me, so I had to take half pills.
3Holly- I hope you get that bed soon! Feel so bad for you and your suffering.
Hugs to everyone else! xo letranger
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Holly, please keep in touch and let us know how you are doing. Having to be in the hospital and needing transfusions, I would be sooooo scared. Wishing you all the best. And why do insurance companies have to make it so difficult on us. It's not right.
Ranger, I do not have any immodium, but will get some. However, I don't think I am going to do that to myself again. Not much quality when you are dealing with that. But if the Immodium helps, then maybe. I am on my week off, so will see what that brings! If you know what I mean!
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Goldie, you need to talk to your doc about your excessive Big D, if it's that serious. They can help you with the correct dose. Call the nurse today. They started me on too large of a dose and I got constipated.
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Goldie, you should absolutely get the ammonium - my friend who had small intestine cancer swears by it - had to take way more than the recommended dose (even up to 13aday at the worst times) and her GI doctor assured her it was safe even at those huge doses, the Immodium got her through it all. She never goes anywhere without it. Keep it in your pocketbook all the time, she says it works like a charm. Hope you have relief soon.
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Goldie-the bone biopsy is for the Impact Assay study-its where they test for over 300 genomes so they know how to treat me going forward. When they did my left clavicle and my liver biopsies they didn't get enough tissue to do the testing. You should really speak to your nurse about what they feel you should take for the D so that you get some relief soon.
Holly I'm so sorry for the issues you're having. It's bad enough we have to deal with MBC but also having to deal with these crazy insurance companies is too much some times!
Babs
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Babs, I have been told that the chance of success at biopsy on my bone mets is way too low to justify the pain. But, as my tumors make babies, maybe that will change. I have stored tumor material from my original dx and surgery in 2005, so for now, we are using that material for what DanaFarber calls the oncoPanel. I think it similar to the Impact Assay study.
Holly, I am so sorry to hear that you have to spend a week in the hospital. What is the plan going forward?
Goldie, gosh it is hard to hear how hard this drug is for you to tolerate. Have you spoken with your medical team about ways for them to make it more tolerable for you? My team has totally suggested that if I start up with the BigD that imodium is the drug of choice. They tell me I should take it proactively, using the maximum dosage on the side of the box. That seems to mean taking it every four hours, whether it is needed or not. See if your team agrees.
I will start up again in the AM, a delay of two days for a variety of reasons. I admit to wishing it wasn't needed, but, my scans do not lie and back to Xeloda I go.
*susan*
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You girls are so sweet, thank you for the concern. I've been on X for almost a year. My scans showed some progression and my TM's rose a bit. So my onc wanted me to try an increased dose, just increasing by one pill. So from 5 pills daily to 6 pills. He pretty much lets me do the adjustments. He says I know my body. So I will let him know that I will make some adjustment and ask which would be best. Between 5 and 6 pills. I can alternate daily. I can do 5 pills the first week, and 6 the following, or visa versa. I could try again, the 7/7 schedule, but with 6 pills. I did that schedule with 5 pills and that's when the scans showed progression and TM's went up. Not sure if that's the reason or not, no way to know.
Babs, thanks for the explanation. I will have to look that up, as I haven't heard of this Impact Assay.
Day 2 being off, and still having cramps and D....oy vey!
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How has your hair held up with xeloda? I was told to expect some thinning but not hair loss like with my prior chemo. I know in the grand scheme of things hair is way down the list, but I've told very few people that my BC has returned and it may become apparent if my hair starts changing a lot. Thank you.
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No hair loss for me! And I think for most of us, if not all of us.
I don't know that I would do a chemo, if I have to lose my hair again. Just don't know!
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Thanks Goldie, that makes me feel much better! Took a shower this morning and noticed some hair had fallen out. I hopefully am just hyper-sensitive but it freaked me out since I'm only on day 6 of my first cycle of xeloda. My hair has finally grown back to the point where Ilike it
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I'm noticing some hair loss but my MO says it's due to the transition of my meds. I hope so especially since I work for a premiere hair restoration Doctor. It won't look too great for his office mgr to have very thin hair!!!!
Babs
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I've only been on it 8 weeks, but so far my hair is exactly the same. I hear you, Purplegurl about not wanting the hair to tip people off just yet. I will let it go if/when I need to, but I really like being treated like a normal person and not like "cancer girl," I'm not looking forward to the day when I go bald again.
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No hair loss or thinning here, after about 60 cycles.
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Thank you everyone for the reassurances about hair. It helps to ease my mind
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Hi ladies! I am finally starting Xeloda/Tykerb this Friday. It's been a few weeks since I posted because I have been waiting, waiting, waiting for insurance approval. What a pain in the butt! For those asking about copays, I am paying $150 for a 30 day supply of Xeloda and another $150 for a 30 day supply of the Tykerb. I have no idea if there is a deductible I need to meet or not-but that was a good point that was brought up and I need to check on it. $300/month will get expensive.
I admit to not having read all the pages of this thread. It is very long and I'm not sure I have the patience these days! I have a question for anyone who is currently or has ever been on Xeloda, particularly with Tykerb:
Has this tx worked well for anyone?
It seems like most of the posts here indicate that the side effects are brutal and then the Xeloda doesn't work. It seems that after a few cycles/months, their onc moves them to something else because the Xeloda tx doesn't work.
So, I guess what I really want to know is if anyone has had success? Please share your stories.
January has been a very difficult month. I found out shortly after Christmas that my previous tx wasn't working as my tumor markers had jumped dramatically. TMs are accurate for me. I have been in a horrible funk, with the January blahs on top of it. This is the longest I've gone feeling this way. I'm hoping for some good news soon.
ETA: I know everyone responds differently to a tx. What works well for one person may completely fail another. It just seems that more often than not, Xeloda fails.
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Macy- I was on the tykerb Xeloda combo for over 2 1/2 years. A single solitary liver met was cause to go off tykerb and back onto herceptin. I'm still on Xeloda 3+ years and going strong. I have been BED for almost all of those 3 years. So this combo worked wonders for me.
My biggest SE are/ were diarrhea ( Imodium helps), and fatigue. I have mild hand foot symptoms. I do get an ingrown toenail from the Meds but a trip to podiatrist fixes this. So I find this treatment very tolerable.?
Xeloda dosing does need adjusting in the big fining or sometimes during treatment. So always speak up. It's normal to have to adjust it.
I'd say nausea is normal in the beginning but after a bit your body adjusts hopefully( use Meds to help). Rest when you can. Get some good hand/foot cream. You might get a rash but things like Benadryl and dose adjustment can help with that.
People do have a hard time with Xeloda. Others don't. I had my fair share in the beginning. But after one adjustments and time my body is doing ok on Xeloda.
This thread is great and full of information.
Best wishes
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Thank you, leftfootforward! I hope to be like you!
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Macy, you're right that Xeloda isn't effective for everyone, but I wouldn't call it brutal. I was actually thinking just today that overall I feel really, really good! My hands are a little sore and my feet have weird calluses when I'm in my "on" weeks but with the urea cream my onc recommended, that's the extent of it. I have some fatigue and occasional slight nausea, but nothing that stops me from doing anything.
I hope it's very effective for you (for all of us, actually!)--please don't worry too much about it being a difficult drug, it definitely isn't difficult for me and I think a lot of people are also finding it tolerable. And, like LFF said, if you do have hard side effects, there are things that can be done to help mitigate them!
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Macy, every new step into the unknown is unsettling. May I gently encourage you to go forward hopefully? I've had 60 cycles of Xeloda so far, and it has been a miracle drug for me. I was in seriously critical condition when I started on it, and now I have been NED for almost two years. Do I live with some side effects? Well, sure. But I'm willing to put up with a few side effects if the main one is LIFE.
You may do just fine!
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Macy, I am doing well on Xeloda, also. The scan I had last month showed my liver mets were smaller after the first three months. My one did lower the dose because of HFS, but now it hardly bothers me at all- just around days 4 and 5 of my week off.
There's a good chance this drug will work for you. Good luck!
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great news Sandilee, so glad you are doing well!
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leftfootforward, RosesToeses, lulubee, sandilee, thank you for your responses and encouragement. I really don't mean to be so negative. I always get so nervous before starting a new treatment. I don't know why, because I've been able to handle the side-effects of all of them. Even the dreaded adriamycin + cytoxan earlier several months back wasn't that bad for me. Heck, I went on a vacation during AC and did a hike!
It's difficult because my first 3 treatment lines have failed me and I'm only about a year into stage iv land. Nothing can even get me stable but I'm hoping Xeloda will.
Thank you all again for taking your time to respond. I will let everyone know how it goes.
I have a question about Xeloda that is probably TMI but I was embarrassed to call and ask the nurse and didn't think of it until afterwards. Maybe the nice husband who has been chiming in on the thread from time to time will offer some insight.
Here goes...I was told the normal spiel about body fluids and contamination while on chemo (Xeloda) and how to be careful. In the regular IV chemos, sex was to be avoided for at least 48 hours after infusion. If Xeloda is taken for 2 full weeks, how does one deal with the sex issue? I admit that my libido is pretty much gone but my husband, poor guy...
Any insight someone feels comfortable sharing about this topic, please share.
Okay, I'm going to go sit in the corner now and blush!
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Macy,
I had never heard of a 48-hours wait period for sex after chemo infusion. I would think that Xeloda is even less intrusive, but with a caveat. I'll send you a private message to give you details, so that you don't have to blush. Bottom line is that my wife and I have not changed much our sexual relationship because of cancer. Actually from one point of view cancer has even improved it: it made us feel closer and more appreciative of the relationship we have.
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Hello All-
I love following this thread the best I can. It moves so fast!! Does anyone have any advice on how to alleviate pain from getting a sore on my tongue. I've been on X since October with the 14/7 routine. 4 pills a day and I was told that sores in the mouth may be a possibility. Well now it seems I developed one on my tongue and it hurts! My hands and feet are all good except maybe losing some feeling in my fingertips of my left hand but that is no big deal.
Thanks so much!
Renee
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