All about Xeloda
Comments
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Hello everyone! I am due to start X this coming Monday. How bad are the SEs compared to the other chemo regimens I've already had?
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welcome @justsnapd8. I can’t tell you about the comparisons of one chemo tot he next since this is my first. I started in November and I think I am getting the worst of it now. For me the fatigue and loss of motivation is the worst part. I feel like I’ve aged 100 years. Some constipation that’s manageable. Slight flaking on my toe tips. Fingers and hands are fine but they look like they’ve aged 100 years too and I can’t use my fingerprint to open my phone anymore! No flaking but just different.
These treatments come with crazy side effects!
Do your research on the starting dose. It doesn’t have to be the largest dose possible. Good luck,
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@aj that is so glad to hear! Keep it up,
I just had my 1st scan today and it seems mixed. Some things have disappeared, most stable. Liver has a lot but they can’t compare to the last PET because my insurance won’t allow PETs for me anymore. I had to have CTs and a bone scan. I guess it’s difficult to accurately compare two different types of imaging. Hopefully things are stable enough to stay on X. MO next week.
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@dulcea I read about the flaking on your toe tips earlier; hoping it's not irritating you too much. I'm still fatigued and haven't had chemo since November. I live alone and stayed with my sister for eight months while going through chemo, and surgery. I'm back home now. Hoping I can stay here. That's why I was asking about SEs.
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Xeloda is way better than the IV chemo that I had at stage 2. Yes, I have HFS but I’ll take it!
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Since I have been so sick after my Herceptin, they finally ordered a bacteria culture and I have a staph infection in my 23 year old port.
I went to the ER Monday night and they put in a mid line. Surgeon wanted to try to kill the staph bacteria in the port and not have to remove the port. But the heavy duty antibiotic they gave me the worst leg pain that I have ever had in my life. Plus arm and leg tremors. So they removed my port and the mid line. And they put in a picc line. I'm now getting Vincomycin twice a day for 2 hours at a time.
I just got home this afternoon and a home health nurse will come every day for 10 days to give me the Vincomycin antibiotic. I hope to be able to do it myself in the evening, since it has to be given twice a day.
This will be interesting…..
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oh, @denny123 we're really sorry to hear about the staph infection. Amazing that you've not had that in 23 years! We're routing t\for this to be a solution with the heavy-duty antibiotics!!! Please keep us posted
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Thanks!
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@denny123 I'm happy for you that you're rid of this catheter that was causing you so much worry. I hope the removal procedure was not too painful.
Glad to hear you're home and receiving your infusions at home. Good luck.0 -
Thanks. I had twilight sleep for the removal of my chest port. The mid-line and picc line insertion was an awake thing and not very fun.
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Great. I've come up with another side effect. Diminished taste! I was wondering why everything tasted salt-less to me. And today I can't taste my flavored coffee 😭.
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@dulcea Yes, I also have a deficit in taste and funny smells in my nose at times!
I'm coming out of a terrible week of flu and regaining some energy to do everyday things. I saw the MO again this morning, my platelets are back up and I'm starting X again tomorrow. My fingertips recovered well during this break. I am happy.1 -
Glad you are doing better after the flue @soldanella . That must be a great relief. And it must be nice to have your old fingertips back for a few days anyway.
It took me a few days to figure out my taste situation as I hadn't seen it mentioned on here before.
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Thought I'd check in to see how everyone is doing on Xeloda.
I'm in the middle of cycle 6. Fatigue and brain fog are probably the worst for me. I am seriously planning my retirement now. Naps right after my 4-5 hour work day help a lot. I live for the weekends and school vacations! I hope to be able to finish out the school year which ends in June.
I had a scan in February and everything appears stable. It's so nice to have those few months in between good scans. It makes me feel invincible, not doomed.
Hands and feet are still good but no fingerprints. I hate having to use my passwords for everything now!
My liver got really painful until just recently and it had me very scared. I read though that when you start a new treatment, your liver may react to it and I think that is what happened because it went from being so very painful all the time to no pain/sensation at all practically overnight.
CEA going up and CA15-3 is "normal" but my tumor markers have never been reliable.
I hope everyone else is doing well and looking forward to spring. I am seeing little signs of it here.
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@dulcea I'm glad your scans are good. I can't imagine working and going through cancer treatment; I've been retired for a couple years and have taken full advantage of a nap after lunch lol. I'm still a newbie with X. today is my last day of cycle one. Well, the two weeks on anyway. I'll take a week off and do it again. I haven't really had any problems with it. I was terrified at first that it was gonna make me nauseous, but it doesn't.
I'm in Louisiana so a warmer climate and spring will get here any minute. Enjoy your day!1 -
I am still hanging in here and will have surgery on Monday for a new port. My previous 23-year-old chest port gave me sepsis.
So I have been off Herceptin and Xeloda for about a month and a half, which makes me very nervous.
If all goes well, I can get back on Herceptin and Xeloda this Friday.
I am still watching my folic acid foods, of course. So I only have the dryness to contend with. I learned 7 years ago when I started on Xeloda, to always hold my glasses with drinks with my finger under the bottom. Otherwise, the glass slips right out of my hand, because of my lack of fingerprints.
I am in PA and my daffodils are coming up now and the days have been in the 70's. I am excited to start working on my vegetable and flower gardens.
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@dulcea Thank you for the news, I'm very happy with your scan results, finally some stability after your progression on Truqap...it's good to know that X is working for you.
I'm going for a Tep Scan in 2 weeks and I can already feel the stress rising. Let's stay zen ...MDR
I took early retirement 2 years ago at the time of the diagnosis and I don't regret it considering the fatigue due to the X. Bravo for wanting to finish your school year.
Since I've resumed treatment with a reduced dose (1500mg 2x/j) and a 7 out of 7 schedule, I'm much better in terms of fatigue, nausea and gastric pain. My hands are fine and I have a few problems with my heels and toes, but I'm managing with ointments and Betadine.
The Ca 15-3 is still going down a little, the CEA is still going up and I hope this is a sign that the X is working and attacking my metastases well.
Liver enzymes are moving in the right direction.
We're going up to the mountains for a few days next week, where the vegetable garden is still covered in snow, but here on the plains, spring is setting in and the sound of birds waking me up in the morning... a pure delight.
@justsnapd8 I am happy for you that the 1st cycle of Xeloda went well, I wish you much success with this new treatment for you.
Yes, naps after lunch are also very precious to me and I feel very tired if I don't take them.
Have a nice day!
@denny123 I'll be thinking of you on Monday and send you lots of positive vibes for your intervention.
You'll be able to start your treatments soon.
It's nice to see the first daffodils coming out of the ground, and I bought some in pots to give our living room a touch of spring.
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Hey ladies so happy to hear everyone is holding steady, @dulcea may it continue on. @denny123 Positivity your way that all goes smoothly tomorrow and you can resume treatment. I'm in South Jersey and my daffodils bloomed this week with that nice warm weather. Gives me a mental boost seeing signs of Spring on the way.
Yep smoothest hands around here also.Although I feel like they look like the hands of an 80 year old lol. Oh well I"ll trade that for stable! Well wishes this week for scans, surgeries and appointments this week.
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Good to hear from everyone. We are all plugging along.
@justsnapd8 even though I work with behaviorally challenged students, my job is my sanity. It is hard to get going in the morning but once I am there, I live on adrenaline and cancer doesn't enter my thoughts. Xeloda has been easy compared to Verzenio which was the worst for me so far. I was so nauseous 24/7 and lost a lot of weight. The diarrhea from Verzenio almost killed me too. Xeloda is a walk in the park! And I wouldn't be able to do it without the naps! I feel guilty napping but I have to remind myself that I CAN nap and it's OK. Congrats on finishing your first two week cycle. Nausea has not been an issue for me with X and I hope the same stays true for you. In fact, I have gained a lot of weight due to my great appetite. I just don't want to cook!
@denny123 I didn't realize you were on two treatments. How long have you been doing that? I'm sure that compounds some side effects for you. How are you feeling being off the two treatments for this long? Better? I wish you well tomorrow. Sepsis does not sound fun.
@soldanella I love to hear your descriptions of your mountains. When you live near mountains, do you notice how beautiful they are everyday? Glad you are feeling better on the reduced dose. My husband just got laid off so I will have to wait until he has job with insurance before I can retire. We are not old enough yet for medicaid…. which may or may not be available to us when (if) we reach that age anyway due to the current administration.
@cookie54 thank you for the well wishes. Yes! Old lady hands! I think mine look like a 100 year olds! Spring is starting to burst here but no daffodils yet in MA. Song sparrows, geese, wood ducks and spring peepers make me so happy! I love noisy mornings.
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Thanks ladies! I do feel better, but still tired a lot.
@dulcea I have been on Herceptin and Xeloda for over 7 years. I am anxious now to see if I still get the chills during my Herceptin infusion. If not, that means that the staph bacteria has been in my blood for almost 3 years.
@soldanella do you mean a PET scan? I have never heard of a Tep scan. Hope that the results are good. Enjoy your vacation!
@cookie54 I agree about the old lady hands. I lost 30 pounds and now my veins are so visible. But I am almost 76, so I guess this is normal.
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