All about Xeloda
Comments
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@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.
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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.
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@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.
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@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!
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@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?
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Well, my love affair with Xeloda is coming to a close. Moving on to IV chemo. Boo! I’ll be getting doxil. Not happy
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@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.
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@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.
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@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.
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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.
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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! ❤️
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@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!🤞
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@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
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@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.
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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.
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Hi there, I’m back because right after I posted my last comment, the side effects really kicked in. I ended up basically bed resting for 5 full days. I couldn’t eat or drink much because my stomach was turning even with a sip of water, and it was worse with food. I also had to run to the bathroom after almost every bite.
The hand-foot syndrome has also gotten pretty severe. My hands are swollen and very red, and it’s been difficult to walk comfortably.
I talked to my oncologist, and he may switch me to a 7/7 schedule. I wanted to ask how 7/7 was for you. Did it make a significant difference in your quality of life, or was the difference more subtle?
I’d really love to hear your experience and hope 7/7 made things much better for you!2 -
Oh I'm so sorry to hear that you have developed such problems with side effects that have knocked you for a loop. My heart goes out to you. As you know I started in July at a very low dose because of the deficiency identified in my lab work in the enzyme that metabolizes Xeloda. I started from the beginning on the 7 days on/7 days off routine which was a non-negotiable for me but my oncologist totally agreed. My first cycle(1 month so 2 weeks of treatment with a week off after each 7 days) I started at 800mg twice daily. My only side effect was the heartburn which my oncologist ordered Famotidine for and it was totally effective so I take it twice daily. My 2nd cycle I was increased to 950mg twice daily and tolerated it well with no side effects. I started my 3rd cycle this past Monday and was increased to 1000mg twice daily and so far tolerating well. If by the time my week off finishes at the end of next week things remain the same I will increase myself up to 1150 mg twice daily. The maximum dosage I would go up to is 1350mg twice daily(2700 mg total) as per the supporting literature that for MBC patients with the goal being long term treatment as opposed to cure this low dose 7 day on/7 day off routine is the best. With a recent article posted in PubMed that supports this plus it has been discussed and approved at various breast cancer symposiums over the past 2 years. I've included the link to the article if you are interested and could show to your oncologist as well. If you don't want to read the entire thing just click the discussion on the right hand side.
Personally I can't imagine doing anything at this stage in my treatment other than the 7 days on/7 days off cycles. My oncologist also feels that it makes a significant difference in my body being able to deal with the side effects as the every 2nd week off allows filtering of the drug more effectively. Obviously the decision is up to you and your oncologist but based on how you have struggled I think a dose reduction is in order and switching to the 7/7 is the way to go. Please keep me posted and if there is anything else I can help you with I'm here to help. Take care.
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Thank you so much for taking the time to share all of this with me. It really means a lot, especially right now. I honestly had no idea about the 7 days on/7 days off schedule or that it was being used this way for MBC. After what I’ve been through these last few days, I’m definitely going to talk to my oncologist about it. I’ll check out the article you sent and bring it up with her as well.
I’m so glad you’ve been tolerating Xeloda so well, even with the dose increases. Thank you again for sharing all of this with me and for sending the link. I really appreciate it. I will keep you posted .
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@ailurophile @girlsptz Hi just going to add my two cents for what it’s worth. I started on May 2nd at 3000 MG for 14/7. It started OK and then hand foot started and then the nausea turned out to be unbearable. I would find myself crying and sleeping and not moving for days and days at a time. I made it until sometime in July and then switched to 7/7. It took a few weeks for that to kick in, and I have been almost normal, whatever that is, since then. My tumor markers went down drastically when I was on the 14/7. I’ll find out next week if the tumor markers have climbed now that I’m on 7/7 for 2 months. My oncologist seems to have the philosophy of throw the most at me that I can possibly take and then reduce me. I don’t agree with it, but I did it on the last 3 meds I’ve been on. I hope you both are getting the dosage and cycles that work for you and that the side effects are or become manageable. Wishing the best for you!
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Thank you so much for sharing your experience. I’m so sorry you had to go through all of that. It sounds incredibly tough. I really hope your tumor markers stay down on the 7/7 schedule and that you continue feeling almost normal. If you don’t mind, please keep us posted on your results. It would be really helpful to hear how things go, especially as a real-life example of how the 7/7 schedule is working for you. Wishing you the very best and thank you so much for your response.
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@ailurophile Thanks for your response. I’ll definitely give you an update next week. Fingers crossed!
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Your two cents is definitely worth all of us seeing so thank you for sharing. I'm so sorry that you had to go through all that. It sounds like a nightmare. I can't believe you suffered 2 months like that. I will say that I was a nurse for 33 years so me and my oncologist have a more peer to peer relationship and from the beginning I told her that I would be the Captain of this ship. I never want decisions made without my input and she respects that. I'm new to Xeloda and had to start on a low dose and am working my way up. We never even discussed doing the 14 days on/7 days off schedule but in conversation with her afterwards she said that since there was verified literature to support lower doses for metastatic patients when cure is not in the picture she would never make her patients endure the higher doses of drugs and that it was important to find the sweet spot. After my first cycle of the low dose Xeloda with the 7 days on/7 days off schedule my tumor marker dropped over 50 points so I am hopeful that even though you are now on that cycle you will continue to see a drop, perhaps not so much but that's not really the point is it. It's the trend that matters. Please take care and I hope you report back to us how you are doing now that you feel almost back to normal….as you say whatever normal is anymore after multiple years fighting this disease and continuous drugs to keep it at bay.
Remember to be your own advocate. It's your body and life and if your QOL is not there then speak up sooner for change.
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hi @girlsptz thanks for your response. I bet having been a nurse does really help you with your oncologist relationship. That is great and I like the philosophy of while no cure but maintaining that sweet spot. I must say I do advocate for myself almost all the time. In fact so much so that I think they dread seeing me coming lol! like you said the drop in tumor markers may not be so substantial but a little bit or holding steady would be fine with me while keeping my quality of life. I’ll keep you posted. Thanks again.
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I started on 7/7 and was able to manage side effects ok. Was on Xeloda for 2 1/2 years. Unfortunately it stopped working just recently. Boo.
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Thanks so much for that positive post. First of all I am so sorry that your treatment just stopped working but to hear that it worked for 2 1/2 years gives me so much hope. I hope your next treatment works very well for you too. Have they chosen what that treatment is yet? Sorry if you have already posted this. I'm new to the forum and haven't had a chance to read all the older posts yet. Take care. Sandra
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Sorry after looking back at some posts I see that your oncologist is moving you to Doxil. That is a tried and true chemotherapy drug approved in 1995 for various cancers and it was started around 2003 for MBC so it's got a long track record. I will be rooting for you that the side effects are manageable and please keep us posted as you are able. Good luck! Sandra
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Just checking in with you to see that hopefully you are feeling better at this point. Have you seen your oncologist to see if she approves of the 7/7 schedule and if you have made any changes yet. Thinking of you. Sandra
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Hi Sandra, thank you for checking in. He didn’t approve the 7/7 schedule. Instead, he reduced my dose from 2,500 mg to 2,000 mg per day. Today is day 3 of my 3rd cycle, and I’m still not sure how I’ll feel next week because, as you may have experienced too, the last few days of the cycle and about half of the rest week are usually the worst for me. I’ll give you an update next week. I’m hoping the dose reduction will make it more tolerable.
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@ailurophile @girlsptz just wanted to let you know that my labs yesterday are still looking good. Tumor markers are still going down even slightly, but that is OK with me. White and red blood cells extremely low and I’m feeling not so great kind of like I’m coming down with flu type thing. But the rest of it is positive. I have to find a new oncologist because she canceled my appointment with me at the last minute after driving for two hours. So now on the top of my to-do list. How are you both doing?
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