All about Xeloda
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I hear you on the redistribution. It sucks!!! I have had issues since I had my ovaries removed but it seemed to get worse on Xeloda. For the first time in my life, I want to keep the weight on my thighs (to keep it from redistributing to my belly!).
I did seem to lose a bit of weight on Aromasin. There have been some small studies that show that, based on its slightly androgenic effect, it slightly increases muscle mass and decreases fat.
The only indirectly related drug I know of that helps with weight loss is Wellbutrin. I just started it and have lost 6 of the 8 pounds I gained when I started Xeloda.
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JFL: I'm trying to watch my carbs...but some weeks on Xeloda, I have a lot of diarrhea, so I HAVE to eat stuff like bread and rice and starchy bananas to keep the diarrhea from getting really bad. Of course, you can take Imodium, but I try not to take that unless I absolutely have to - one more DRUG for my poor tumor-bound liver to deal with. I also have nausea on and off (not really bad, but I don't feel like eating anything except comfort food: mac n' cheese, potatoes, ice cream). These things don't gag me and are easy to digest when my stomach is acting up.
I went to a seminar on what to eat during chemo, and the nutritionist said that when the nausea from chemo is bad, you have to eat whatever you can keep down. Once you're OFF chemo, you can get back on track, but those of us at Stage IV will always have to be on some sort of "treatment" for the rest of our lives to keep things from progressing further.
I think the cancer in and of itself also efs with your metabolism. Having your ovaries removed puts you into instant surgical menopause too, and we all know it's harder to keep the weight off after menopause. I think I have to try and trust my body on this. If I put a couple of pounds back on, maybe that's a good thing. I know when cancer gets really bad, your body just starts to waste away (I've seen it with my mom, friends' relatives, coworkers, etc. who've passed from cancer).
All we can do is best we can.
Wishing everyone pain-free days and no progression...
Lita
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My wife has been off xeloda for 3 weeks now, owing to low platelet and neutrophils. Her neutrophils rose to 1.3 and platelets to 59 this week, but for some reason the oncologist has not given her the approval to resume treatment. In the past, he draws the line at 1.0 for neutrophils and 50 for platelets. He is more cautious because she is on a blood thinner (as she was at one time suffering from presumably clots in her liver, but that seems to be residing, even before the blood thinners). Her tumor markers continue to fall (CA15 at 40 and CEA at 60 now), and the recent mri shows the tumors have shrunk. Instead of telling us why he won't approve her to continue treatment, he left us a cryptic message that he wants us to wait another week, come in and see him, and discuss other treatment options. This scares the crap out of my wife. Any idea what might be coming from his proposal? It's either a different chemo regimine, or some other treatment. Would a different chemo be easier on her platelet count? Is it too early to switch to an antihormonal treatment? Her ER/PR scored 100% positive on the biopsy of her metastatis.
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Timothy: I was Dx'd 6 months ago, so I don't have as much experience as the other gals do. Hopefully, someone will quickly chime in.
I had to go off Xeloda for a week at the beginning of my Tx because my liver numbers TRIPLED from the normal 30 range into the 90s. MO said to get off my pain med (Norco/hydrocodone) immediately because the Tylenol component that is mixed into the hydrocodone must have jacked up the numbers. Other meds can indeed influence the chemo drugs and the body's response.
The MO must have a good reason for wanting to see you personally. I pray that it's good news. Xeloda is a very strong chemo. There are other IV chemos out there that can be tolerated with minimal SEs, and women can even work while taking the treatments, but EVERYONE is different, and everything else that your wife is dealing with must be taken into consideration in deciding how to treat her.
I don't see anything in the signature area, so I don't know what other mets and issues your wife is dealing with besides the need to be on blood thinners, so I'm sorry I can't offer any other tips.
I'll be praying for you both, Lita
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PET scan in the morning, 7:30am. Prayers and good thoughts appreciated!
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lulu. I will pray for you
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lulubee, you are in my thoughts and prayers.
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Thank you! I'll take all the prayers I can get!
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now just get some sleep Lulu
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Lulu. Sending you prayers for good scans!
Bab
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Lulu praying for all the best for you.
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Fitz,
Ibrance. I lost 15 lbs in 6 months on Ibrance. Trade off? I felt like crap and was not sure that treatment was a valid option. So, I will take the extra pounds along with the will to live. Of course, Ibrance did absolutely nothing for me, so I didn't actually have to make a decision.
Lulu, all the best!
*susan*
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Praying for you Lulu.
My wife just got off the phone with the Oncologist's nurse. He has changed his position, she is to restart on the xeloda again. ????? Frustrating and nerve racking. Switching treatments made no sense when it has been working so well, consistently, and the side effects are tolerable. Two weeks ago he was please with the MRI and blood tests, then out of the blue????? Switching oncologists.
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My mom will be joining the Xeloda ladies after Ibrance failed her. Any longterm people on this pill? We are feeling crushed!
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Guidinglight, there are some on this thread who have been on Xeloda for 2, 3 and even 5 years!
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Timothy. A new oncologist sound like a smart move!
Bab
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He is a nice guy, but his head doesn't seem to be in it. Two weeks ago he was ready for my wife to restart chemo, then I asked him how her blood counts were, then he looked at it and made her wait for them to improve. He's from time to time passing over important details and changing his standards. Why order blood work and then not look at it? Why is a blood count good one time and then later something the same or better is no good? Why is he scheduling blood work only an hour before we meet, and then of course we only stand a 50/50 chance of having it when we meet with him? Wasn't that the point of the meeting? Also, no print out available for her blood work, all over the phone. Then my wife gets a print out the next week and its completely different. Then we are told the blood sample is split in two and sent to two different hospitals and that their equipment may vary. Does that sound at all probable that a routine CBC is split and sent to two different labs, the second of which the results are just disregarded?
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Guiding Light: Xeloda works wonders for some women. Hope it works well for your mom. The SEs are tolerable. After she's been on a few cycles, she'll get the hang of what to eat and what not to eat after it builds up in her system.
Keeps us posted on her SEs...we are here to help with whatever she'll be going thru.
Timothy: Yeah, get a new onc. I'm on Xeloda and I have to get a blood test the day before everytime I go to see the MO because they look at my liver enzymes, my kidney function, my calcium status, etc. My health care system has an online portal, so I get the blood test results emailed to me everytime and they graph the results, too. Don't know if your med system provides that service. It's nice to be able to track it yourself. Gives you a little more control.
Lita
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Hi, I am going to be starting this soon and looking for advice on do's and don'ts. I am on a full liquid diet and scared I won't be eating enough. How soon after I start should doc do a scan to see if it's working? I have mets to my abdomen which has caused enlarged nodes which collapsed my right ureter and part of small intestine. This resulted in having to have a naphostomy tube and had a blockage and had to have my stomach pumped for over two days so now the full liquid diet 😓. I am really feeling defeated
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Dianarose, I believe there is somewhat of an inadequacy of scans to quickly pick up changes at the early stage of treatment. They usually don't schedule a scan until you have been on treatment for a couple of months. Are you displaying tumor markers? If so, they may give you some quicker feedback, that later can be confirmed by a scan.
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hi Timothy- yes I have my tumor markers checked. Does a month on this sound reasonable to have them check again
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My wife gets her tumor markers checked monthly. It took a couple of months before the tumor markers started to really fall. If I recall correctly, the first time she had her tumor markers checked, at around 4 weeks, it had fallen 10%. After that, it picked up speed, and began to fall 30% every 30 days.
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Timothy- that's awesome for your wife and encouraging. Thanks for sh
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Timothy--thanks for posting. Very encouraging indeed. My wife got scanned (CT and brain MRI) last week. One of her liver tumors decreased, but three increased, albeit less than 20%, so she didn't get booted from the A/A + ribociclib trial she had been on. However, we found out today that she's got a new brain lesion (still small at 4 mm) that wasn't there at the end of June, so now she's off the trial and starting Xeloda this week. We're meeting with the MO this week and will hopefully have something scheduled with the RO soon. Hoping we can just SRS this one like the last one.
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I had started Xeloda in March and now have progression and will be starting Gemzar. Does anyone know about Gemzar? Kind of scared as this will be my first IV chemo. Bone Mets have spread to my skul and now have another spot on my lung.
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Peanut, I have not been on Gemzar so no intel for you. I hope that this drug works well for you.
Tomorrow, I start cycle 13. I have a rye roll on the table to eat for breakfast. I will enjoy this roll with a bit of cheese and maybe some butter. Scans are coming. Then we will know what is going on. Tumor markers have been rising very slowly....
*susan*
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I discovered the last two days that if I take Xeloda with dinner I fall asleep before my kids are done with honework. Not good. So back to taking my night disecat 10-11 pm so I can finish parenting. I knew there was a reason I took it so late. Now I remember.
Thankful tomorrow is my first day off this cycle.
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peanuts. I have no experience with gezmar. Just wanted to say sorry for your progression and hoping this iv chemo helps I had several Iv chemo the first time around back in 2002. It scares the crap out of me to think I will e enthalpy get back on this. I no know of many people who never experienced vomiting, nausea, exhaustion. Hoping you will be one of them.
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Leftfoot: Wow! Everyone's different.
I have fatigue with Xeloda, but I don't fall asleep easily at all. If anything, I have to take either cannabis tincture or an edible to help me fall asleep. I take my X right after I finish dinner. Of course, I usually eat late, after 8 PM, because I usually don't finish breakfast until after 9 am or so. They say to try and space the X doses 12 hours apart, so I'm doing the best I can spacing it out 10 - 11 hrs.
Best of luck w/Tx.
Lita
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lita- it could be that I'm up at 5:30 to start the school day off and run until after they are in bed, usually about 10 pm. So I think I'm exhausted and then add Xeloda fatigue and voila- asleep at 7.
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