All about Xeloda
Comments
-
@girlsptz Thank you for your message. I see that you have a long journey and many treatments that I recognize for having taken them too. I think it's a good start with Xeloda for you if the markers drop with a reduced dose. You're just doing hand and foot protection and I'm happy to hear that your stomach problems have calmed down. You are here in a very good group with differentiated experience sharing. I learned from you that you can take Xeloda despite the DPD deficiency, it's very interesting. I wish you good results with this treatment.
1 -
Thank you for the welcome. I have read so many great informative posts here already so I'm glad to have joined. I do see we have similar journeys. I also get Xgeva every 3 months. I was previously on Zometa but began having seeing some kidney dysfunction that my oncologist felt might be partly from Zometa. Xgeva wasn't covered here but she filled out a special authorization form in light of the kidney dysfunction and they then approved it.
One thing I wanted to clarify withs regards to the DPD deficiency…..there are 2 levels. One is a partial deficiency which is what I have and yes you can take lower doses of Xeloda with that with careful monitoring. However there is another level that is complete deficiency of the enzyme and if you have that you cannot take Xeloda or 5FU(which is what Xeloda converts into) at all. In that case another treatment would have to be used. Just wanted to make sure I didn't confuse people. I have my fingers and toes crossed that Xeloda will work on those blasted liver mets. I'll keep everyone posted. Good luck to you.
2 -
@girlsptz Hi there I see you have been on this road for awhile with some ups and downs. Glad to hear you are seeing positive results even with you lower dose of X! It seems as though your doc is very attentive to your side effects and is taking it slow which is good. Hoping you see even more proof that X is doing its job when you get your next scan in Oct. Sending positive vibes your way.
3 -
@vajra13…When my feet get too dry, I use silicone socks for a few days. They really keep the Aquaphor sealed in and help my feet to get moisturized.
@cookie54…I will have my CT scan on Sept 14 to see if the decrease is still okay. Meanwhile, my tongue sores have cleared up.
@girlsptz …Welcome and I hope that we can help you along in your journey! You sure have been through a lot!
4 -
@denny123 Thank you for the welcome. I just saw your advice on the silicone socks. I did purchase those so have them as a backup if I need them. So far my hands and feet are doing well but I saw my oncologist this morning and she is increasing my dose again inch by inch. My journey also had a few other surprises including pathological fractures of my right hip and at the same time a fracture of my left shoulder…this happened while on vacation out of the country so a nightmare to get a medivac arranged to get back to have surgeries on both. That was back in December 2022. Then last year while pulling up my socks I felt a pop and x-ray confirmed a left clavicle fracture that required radiation treatment to try and strengthen the surrounding bone as surgery is not indicated to that area. So my bones are so diseased that I have to be very careful with any movement. My hubby is wonderful. I will read your journey as well and I'm not familiar with the term Her2- somatic?
1 -
Well, my love affair with Xeloda is coming to a close. Moving on to IV chemo. Boo! I’ll be getting doxil. Not happy
4 -
@aj - Sending hugs and good vibes. I really hope the doxil works well for a long, long. long, long time! You're a trooper for sure. I, and I'm sure many others here will be thinking of you.
2 -
@aj sending prayers and love. I have been on chemo (taxol) since January. I have been doing fine but my tumor markers have begun to rise so I dont know for how much longer. I check into the xeloda site because I love the ladies here.
3 -
@aj really sorry that you are moving on and I so hope that things go well for you. May I thank you for your words of wisdom on this thread.
@intolight hopefully your tumour markers steady. I understand why you check in here as it is such a nice group of people.
@girlsptz welcome good to see you here.
@denny123 wishing you luck with your scan and hoping to see you posting good results.
3 -
Hi X ladies I apologize if this a partial repeat. I may have posted a partial message, or it made been deleted. Forgot to save the draft…ugh. I have not been on here since late August. Thank you all for information that you have given me. I am going respond to most recent posts and hope everyone is doing well. I have taken a few falls recently. I am not graceful to begin with but with the X brain fog, sleepiness and vision issues I’ve developed it was bound to happen. Scary embarrassing and painful. Luckily no broken bones!
@threetree so happy to hear of your brain results! Big YAY! How are your muscle aches? Is the heartburn type issue resolved? Did you get a new pillow?! Thanks for all of your posts here. I always love to hear from you and you are so amazing at keeping us all updated on your status and showing concern for us all here.
@intolight we love you too and I am so happy to see you check in here. I’m hoping your markers stop their climb. Please keep us posted. Wishing you the best and sending prayers and hugs.
@aj thank you for information you have passed on to us. I really appreciate your input on the Prilosec effect in X. Surprised it was prescribed to me. I wish the very best to you with the IV chemo. I like threetree, wish you a long long long relationship with doxil. Please keep us posted. Many hugs and prayers.
@denny123 Hi Denise how are you doing on lower dose? Wishing you the best with your next scans. I am on 3000 still and had good markers last month and hoping for same this month. CT was told to be stable but there is actually progression. But slow so I’ll take it. My mom used Cpap for 4 or 5 years but is now using different system with no machine. Have you heard of it? Hoping for best CT results for you!
Taking a break - more soon. Hoping you are all doing the best we can and welcome to @girlsptz.
2 -
Hi beautiful ladies!
I just wanted to check in and share a little update. I’m currently on Day 12 of my second cycle. Two days ago, I experienced some hand-foot syndrome, but other than that, everything has been going pretty well. My biggest issue so far has been a really low appetite. Iam on 2500 and want to know if its a low dose?
I started in August, and I saw that one of you started in July, so we’re pretty close in timing! 😊
I hope everyone is doing well and feeling as good as possible. Sending lots of love and positive vibes to all of you! ❤️
2 -
@aj Sorry to hear you have to move on to IV chemo…stinky for sure! May your side effects be minimal and you have great success on Doxil. Sending strength and hugs to you❤️
@ailurophile Glad to hear things are going pretty well..may you keep on going strong.
@denny123 Positives vibes your way for a good scan on Monday. So glad the mouth sores have cleared, they are absolutley annoying!🤞
2 -
@denny123 thank you for sharing the use of silicone socks, I will get those stat!
@aj were you able to meet with your oncologist? Sorry to hear that you’re switching to another line of treatment. Wishing you favorable results with Doxil.
@girlsptz i was reading your last post and have to share that i, too, had a fracture while on an international vacation. Gosh, it was a roller coaster ride, to say the least. I was medi-vac’ed to Spain to get the surgery done. That experience was indeed one for the books!
Wishing all the very best. Happy weekend!
EL
2 -
@ailurophile I started Xeloda July 20 so a newbie like you. Due to my testing partially positive for the absence of the DPD enzyme required to break down the drug I started at a dose of 1600 per day. Other than some heartburn issues that were resolved with Famotidine I haven't thankfully so far had any other side effects. My oncologist has been slowly edging my dose upwards and I will start 1000mg twice daily on Monday. I do 7 days on/7 days off. So I don't think your 2500mg is considered low dose per se but certainly there is room to increase the dose upwards even more. The goal with MBC is to take the lowest dose that is effective and limits side effects. We are not curable so the goal is to keep us on each treatment for as long as possible if it's working of course. I hope for longevity for both of us.
2 -
Thank you so much for sharing all of that. We really are close — I started August 10! My DPYD test before starting Xeloda was thankfully normal, so I started on 2500 mg a day.
I do get some heartburn too, but Famotidine takes care of it. I also developed some hand and foot syndrome a couple of days ago, and walking was pretty difficult for about two days, but thankfully I’m feeling much better now. Other than that and a pretty low appetite, I’m doing well.
I completely agree with you about finding the lowest effective dose and staying on a treatment as long as it’s working. I’m hoping we both have a long, long time on Xeloda and many more good years ahead.
2
