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All about Xeloda
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@cure-ious I was on xeloda and letrozole (femara) for one year.
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Hi IntoLight!
Lovely to hear from you, hope you are doing well, do you miss San Diego? - And glad to hear you had a good result, another case with double the expected PFS…
And what about cancers with ESR1 mutations, can Xeloda be paired with oral SERDs? Everything is always with fulvestrant, do we have to wait for combination trials? X is such an old drug, would pharma even fund that? I suppose so, I think I saw Imlunestrant was tested with everolimus…
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@cure-ious I have the ESR1 mutation although I didn't know that at the time I was on Xeloda.
There are some things I miss about San Diego, but I am happy where I live now. Thanks for asking.
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Hi ladies. Well I got the results of my latest PET/CT and the first one since I started Xeloda 3 months ago. Results weren't straight forward as I had hoped. Good news is there was no new liver lesions. Inconclusive results with regards to my existing lesions and whether the Xeloda is working. All three of the lesions have decreased SUV slightly and glow dimmer on the scan report which is good but on the other end the lesions appear larger than before.
My oncologist says there is a condition known as treatment-induced necrosis that can be seen with Xeloda. This drug works by interfering with the cancer cells DNA, causing them to die. When a substantial number of cells in the liver die rapidly the tumors can swell, retain fluid slightly on the inside. This causes the structural size to look larger on the CT portion of the scan and the PET portion shows less SUV avidity because the dying tissue is no longer actively consuming glucose…which is how the tracer works. She contacted the radiologist to see if they could be more clear about whether or not this was happening but they said they couldn’t unfortunately.
So next steps is that she is booking a liver MRI within the next several weeks or as soon as they can fit me in because this test is better at looking at liver anatomy to hopefully distinguish whether the treatment-induced necrosis is actually happening or if the cancer is progressing. I will increase my dose of Xeloda again next week up to 2900 mg and go from there.
Have any of you experienced these type of results? Would appreciate any feedback/comments any of you may have. Thanks for listening. Sandra
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@girlsptz - I have not experienced any results like what you describe, and I haven't read about anyone else who has, but I'm wondering if it has anything to do with you gradually raising your dose rather than lowering it? The scan results might appear in a different fashion/sequence in that case - I'm just throwing stuff out there off the top of my head, but it certainly sounds like the Xeloda is doing somethin positive, and that's probably worth waiting some more time (one more 3 months before another scan?) to really get another good look at it all in a more informative way. The MRI sounds like a real good idea. I hope they can fit you in soon. (Just my non-expert two cents here.) Wishing you much, much luck with this!
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@threetree Thanks for your thoughts. My oncologist always says that for whatever reason my scans tend to often come up with "unique" things. This is definitely a time I don't want to be unique. We did discuss whether the slow increase of the Xeloda might have something to do with it. I have a print out of the films and the three lesions definitely look much less intense in brightness and one is very faint. My oncologist contacted the radiologist while we were there to see if they could be more clear about whether or not the treatment necrosis was happening but they said they couldn’t unfortunately and that it would become clearer at the next scan in 3 months. Since next up for me is Enhertu and everything going forward will be infusion I'm very keen to give the Xeloda the extra time to see if it is working…unless the MRI results when I get them can clearly identify the findings as progression. I appreciate your input. Sandra
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@threetree thanks for the good wishes. I did finally get my CT results and everything is stable. It was the most understandable CT I have ever read! I do the same as you and look up words to decipher sometimes and try to understand the best I can and then go back to and ask her questions that need clarification. So for now with tumor markers still dropping although only slightly and stable CT I will remain on X. I hope all is well with you and your digestive issues have lessened. I need to go back and read some of these threads to see how everyone is doing.
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@girlsptz I have not had those type of results or explanation in any PET that I have received. However, my prior onc did tell me at one time that a CT will give a clearer indication on a specific organ than a PET will. I don’t know if that makes sense. As I have mentioned, I never have the same radiologist, and I have never received very really clear explanations on any of my results. I do my best to ask all the questions that I can, but I am always kind of floating out there with my absolute results. I hope you get a clear answer and I know you keep on top of it are well aware of what is going on and advocate fir yourself. Did you get blood lab results back? What is tumor markers status? Sorry if you have already given that information I did not see it in your last post. I hope you get your MRI scheduled soon and get a better feeling for your situation.
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@cure-ious @aj @intolight I read all of your posts regarding adding an estrogen blocker while on X. I have not talked to my oncologist about it as I just switched from one oncologist to another. I have an appointment with her on November 18 and planned on asking her if letrozole, or other is an option for me. I have the ESR1 mutation as well. Is that a reason to not have the option to go on a blocker?
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@marcials1 Hi Marcia. First of all congratulations on your stable CT report. That is a big relief I'm sure. Yes as you said the CT can give clearer pictures of some structures more so than the PET…that's one of the reasons why I get done on a PET/CT machine so it can give a clearer overall picture. However saying that it is the PET part of my scan that probably gave the most information….with regards to the metabolic activity in the lesions being decreased whilst the size of the lesions appeared to have enlarged and this brought on the treatment -induced necrosis discussion. Oh well I will await the MRI which should give more clarity and continue on with Xeloda. I will be increasing my dose again though to 1450 mg twice daily when I resume next week.
You had asked about my tumor markers. I get labs monthly and just had them last week, a few days after the PET was done. My tumor marker was basically the same as previously which doesn't really tell us anything either but I guess psychologically it's always nice to not see a big trend upward in our markers. Anyway onwards I go with staying on Xeloda until I have more definite information. I'm eager to remain on oral treatment as long as I possibly can. Take care. Sandra
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@girlsptz I agree, psychologically the tumor same or trending down always a plus. I know they’re not supposed to be a true indicator, but it still always feels good for them to be going down or remaining stable. I have been told I am a tumor marker junkie. I’m hoping your increased dosage is tolerable. I’m sure it will take adjusting, but as you said staying on X as long as we can while maintaining quality of life is what we hope for. My next line of treatment is also Enhurtu as I’m remembering, you said that the same for you. Staying on the oral chemo is where I want to be for as long as possible. I’m not sure if I will be able to go up from 3000 per day. But if it is an option, I will definitely try it. I do not want to go back to the 14/7 however. Keep us posted. Chat soon. Marcia
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@marcials1, yes it doesn’t seem common to add hormone therapy to Xeloda but it worked for me. Congratulations on good scans! @girlsptz, when I very first started treatment (Verzenio) my tumor markers went way up. My oncologist said that’s often seen. Hope yours go down! Good to get the liver mri.
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So, regarding the issue of whether or not to add an estrogen blocker to Xeloda, assume we believe the data that it really can help with a longer PFS. I've been wondering if its really worthwhile doing that? If you have been on a lot of endocrine therapy, it might be better to break up the treatment with the Xeloda old-school chemo, and not have an anti-estrogen in the mix, show the cancer something completely different, even if you only get six months? And afterwards, or at some point in the future, you might then want to try one of the newer and stronger oral SERDs (not all are only for ESR1 mutant cancers) in a combination with some newer targeted drug, like giredestrant or the mutant specific PIK3CA drugs or Kat6, that could give you a significantly longer PFS. It seems like your MO would have a fairly good idea of how to go, given their experience with different cancer subtypes and knowledge of how your cancer is behaving?
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@cure-ious interesting regarding eliminating the estrogen blocker for a period of time. I have been off of my last one which was exemestane for just over six months. I am going to talk to my ONC about it next month and see what she says. But what you’re saying I think I agree with. I’d like to have some options to at least try before jumping over to Enhurtu. The knowledge you have is amazing by the way! Are you from the medical field or do you do a lot of research on your own?
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@marcials1 Yes Marcia Enhertu is next up for me. In fact my oncologist already gave me the initial teaching material at my last appointment. I will start the 2900 mg daily dose next Monday so hoping I tolerate it well. That's up from my last 2600 mg dose but as you know increments have to be done in either 150mg or 500mg as that's the only two doses that the drug comes in. If I do tolerate that after a month cycle then my next increase would be up to 3000 mg which wouldn't be a big jump and I think that's the highest I would go. I would never try the 14/7 dosing. Since I have the partial DPD enzyme deficiency my oncologist isn't keen to go higher either.
Actually it's funny you mention the tumor markers because for the first I would say 7 years after my diagnosis I really paid little attention to them other than a brief glance since my oncologist does them monthly. I was always very low in the 30's even though I had very extensive bone mets from the start but then all of a sudden they changed the reagent that is used by the lab and my results rose up to the 50's and then never went back down. Before I changed from the Truqap this summer they had climbed to 189 which was my highest. They have dropped now down to around 90 and my focus now is always on trends not one-off's and as stated before going downwards is always welcome. The tumor marker used here is CA 15-3.
Hope you are having a great day. Take care. Sandra
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Well, I do know basic science, I'm a retired research professor, worked for 35 years to understand how key cancer proteins work, we did a lot on a kinase complex that Verzenio inadvertently inhibits, which is why it gives you diarrhea. I was shocked to find out I would actually have to eat the stuff! Overall, I can read the literature quickly, but I worked strictly on a cell and molecular level, so know nothing about all the medical/clinical side of cancer…
I am 11 years out from MBC diagnosis thus far, and was lucky to get 16 months at MD Anderson taking a targeted drug for PIK3CA mutation with Orserdu, with no side effects. I came back home in June to treat a liver met with histotripsy and Y90, was on Verzenio/Orserdu and am now in cycle one of Keytruda with Xeloda, waiting to see if this will work.
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So, I was not happy to learn that Xeloda has a half-life of about 45 minutes. That means the morning dose is mostly long gone by the time you take the evening dose, however MBC mets are by far most active at night, so is that morning dose really needed? It for sure is giving side effects.
Has anyone here seen a difference, like in tumor markers, from dropping the morning dose?
This is something no trial is ever going to test, there is no money to be made in selling Xeloda. Maybe if they would make a longer-lasting drug and then link it up to a Her2 antibody and get it targeted to the tumor, like Enhertu. That would be great, a different payload than Trop1/Enhertu and possibly fewer side effects? Maybe they don't think its strong enough to warrant the work?
However, people here must know if the efficacy gets much worse if you lower the dose, or have to take a low dose for some reason, right? The key would be if you lowered the dose in morning, but not at night…
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@ailurophile Just checking in to see how you are doing? Have you started the 7/7 schedule yet and at what dose? I also seem to remember you have scans scheduled for the first part of November so please do update us on how you get on with your results. I did a separate post a few days ago about my PET scan results. Not exactly what I was hoping to see but not terrible either I don't think. I need a liver MRI to gain some clarity so waiting for that to get booked. Remaining on Xeloda for now but will be increasing my dose to 2900 mg daily starting next Monday. Still on the 7/7 schedule. I have been feeling quite good but just can't seem to see it reflected in my last 2 PET scans unfortunately. Will stay strong and positive and hope for better things to come. My oncologist did give me the preliminary information on Enhertu as just a heads up because it will be my next treatment. My oral options are unfortunately all exhausted here where I live. However I am hopeful that the MRI gives me some good results and shows that Xeloda is actually working and I can continue on Xeloda for now. Christmas is my favorite time of year so I'm not keen to start a new treatment that will take away my joy of the season. Fingers crossed for good results from your scans. Take care. Sandra
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@cure-ious Yes Xeloda definitely has a short half-life and a total clearance from the body per sec in about 4- 5 hours in preparation for the 2nd dose of the day. It is a very old drug and you are correct there isn't much chance that a pharmaceutical company would invest any money to study different scenarios. Interesting thought of yours what would occur with regards to things like tumor markers and success if one stopped taking the morning dose and just took the evening one. Of course none of us that are taking it I'm sure would be willing to try it out. All good food for thought observations and thanks for sharing. Sandra
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@ailurophile - Hi and hope you are doing well. I read your older post about Citrucel again, but was wondering if you (or any others who've had experience with this product) could elaborate a little more on how your experience was. Did you get relief from pain and cramping? Just diarreah, or both diarrhea and constipation, etc. How often do you take it? Did you experience any side effects and if so, what?
I'm continuing to have a lot of digestive problems, and would like to hear about other experiences before I try to take it. My onc recommended it along with a prescription drug, Bentyl. The things I've read about the Bentyl are really scary, although some it does seem to work for. I'd rather try the Citrucel at this point, but am wary of any and all of these things. The Citrucel package says it can clog your throat/esophagus, cause chest pains, vomiting, and breathing problems for some! The onc also suggested Metamucil which seems to have a similar and slightly worse possible side effect profile. I just finished a week on, and am now starting the off week, which can sometimes be worse than the on week. As of this morning, this might be one of those off weeks that isn't so good. Digestive problems and fatigue seem to be my biggest problem with this drug, and the dose reduction seemed to have helped a little bit with the digestive troubles (not the fatigue), but they are still pretty bad. Neither the onc nor I want to go for another dose reduction at this point, but would prefer to try diet adjustments and these different products/prescriptions first.
If anyone has any diet adjustment advice I'd love to hear about that too. I'd much rather make this work with some diet changes that with all these products/prescriptions. Thanks so much!
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@threetree Hi. I know we post back and forth on things in different threads so I thought I would add my more recent experience with gut issues. I have been battling constipation for a while now and have been in awful pain, but have found a solution that works for me. That solution fixes my gut too and after a couple of days my pain was gone, so I thought I would say something. My PA recommended a tea called "Smooth Move." It is an herbal tea (Senna) and I call it my miracle. (I ordered mine off Amazon and add a bit of honey.) You drink one cup only at night when things back up. By morning, voila things start moving again. I only had to drink one cup one night and things worked until I had another Taxol infusion and stopped again nine days later, although I only waited one day of no poop. Last night I had another cup and today worked fine. (This sounds like an advertisement! LOL) To be honest I also take one Colace softener each night too so perhaps the tea jump-started things. I am ready to stop the Colace. Of course I still drink lots of water and all the other things that help, but I feel much better. You might ask your MO if you are concerned, but mine approved. Hope this helps.
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@intolight - Thanks so much for the suggestion. I actually had a years old box of Smooth Move sitting in my cupboard that I threw out this past spring, as it was way past it's use by date. I never did try it, but had it on hand "in case". I think I'm going to order a new box and give it a try. I like Traditional Medicinals tea and I do drink their ginger every day already, and have for years. More recently I've gotten some chamomile. I did see a Yogi tea called "Stomach Ease" and I'm going give that a try too. I would much rather do things like diet adjustments and teas than all the strong, harch, and often toxic drug remedies. Never say never, but I'd really like to see if I can get a handle on this first without the OTC or prescription drugs. I'd also like something I can use occasionally, when I have a flare up, and not something I have to take 24/7 whether I'm having issues or not. Are you using the "original" Smooth Move formula, or one of the newer "flavored" versions? They now have one with chamomile, one with peppermint, and some others I think, based on the original formula with the senna. I'm going to order the original and the chamomile and see how they each work. I've seen where a lot of people also swear by peppermint tea for these gut problems, so I might give that a try later this morning, as I already have a box of that here. I seem to remember trying it ages ago, on the advice of a nurse, but it made me nauseous. I think that was when I had morning sickness though, and not this sort of ailment. It's also 45 years later, so it might be worth another try.
I'm so glad that both the tea and Taxol are working for you, and I really appreciate you taking the time to offer me some very helpful ideas.
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@threetree I have only tried the original smooth move tea…I didn't even know there was a flavored one! Since I don't mind the flavor I will stick with that one until I need more or can find it in a smaller amount. I actually had my second cup two nights ago, a day after my Taxol, so that may be what I need to do. It still worked well. If I can get off OTC meds I will be a happy camper too!
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@intolight - Once again, thank you. I ordered a box of the regular and then one with the chamomile. The chamomile one has the senna, fennel, and something else, but not the licorice that is in the original. Some time ago I read that licorice wasn't good for breast cancer (ER+), and I've also read where it can raise blood pressure, etc. I doubt that having some occasionally would be a big problem though. I also ordered a box of the Yogi tea "Stomach Ease" that isn't specifically for constipation, but general stomach upset. My situation varies so much that I think it fits better in the "general digestive upset" category. The pain and cramping is my biggest problem. I will give these all a try over time and let people know if and how any of this helps.
Sometimes though, I don't think it matters what I eat or drink, but that the chemo pill (Xeloda) just does it's thing regardless. We shall see…
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Thank you for checking in! The MRI showed around 20 very small scattered spots throughout the liver, all less than 1 cm. The good news is that they haven't significantly progressed since the previous scan, so things appear to be stable.
Now we’re waiting for the PET scan results from Friday to get a clearer picture. My CA blood marker has also gone down by about 3–4 points, which is encouraging.
I’m cautiously optimistic that Xeloda may be working, but I still want to push my oncologist to see whether these scattered spots can actually disappear, not just remain stable. One step at a time! I feel like we are on the same both with our results. I expected those little areas be gone but oh well as long as there is no progression we are blessed.
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Hi! I completely understand your concerns. I've had digestive issues with Xeloda too, but interestingly, I've only experienced severe diarrhea once or twice. My main issue has actually been constipation.
I take two Citrucel caplets every morning, consistently, whether I'm having cramps or not. I think it's best used as part of a daily routine rather than something you only take when symptoms show up.
Citrucel helps retain water in the stool, making it softer and easier to pass. Even when I don't have an immediate bowel movement, I can usually tell I need to go. I'll sit on the toilet, relax, give it a little gentle push, and things usually get moving.
It has been helpful for me, although it doesn't completely eliminate all my digestive issues. Everyone reacts differently, of course, but personally, I've found it worth incorporating into my daily routine.2 -
@ailurophile - Hi, thanks for responding. I too have only had bad diarrhea once or twice. Same with bad constipation. That's part of my problem; all the supposed remedies out there are for diarrhea or constipation, and that's not really my problem. My biggest problem is the pain and cramping, and then the overall erratic nature of things; can be more like diarrhea at one point and then two hours later, it's the opposite, or anything in between. Taking a remedy for either constipation or diarrhea isn't exactly what I need - I need something that will calm things down in general and stop the pain and cramping, no matter what type of bowel situation I have at any given time. It can change every few hours.
You say that you take two Citrucel caplets every morning. I'm wondering if the caplets wouldn't be better than the powder that you mix with water. I bought the powder, but after reading about potential side effects, I've been reluctant to try it. Caplets would go directly into your stomach at least, so you could avoid all those side effects that suggest you can clog your throat and esophagus, promote breathing problems. That would be a help over the powder. I'm going to look at the caplets on Amazon and read some reviews and maybe buy some to have on hand, so I can give them a try if none of this tea works. Maybe they would even help along with the tea. Like you say, no one thing is going to necessarily work, and different things might work for different people. It might take some combination of things to get full relief, if that's even possible.
I really appreciate all you've had to say, and wish you continued good luck. Hold out for that Xeloda. It just might be taking longer to show improvement than it does for some others. More of the "we're all different" stuff. I've got my fingers crossed for you!
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@girlsptz regarding the tumor's SUV score, etc. Way back in 2004, after Gemzar and Herceptin cleared out my liver, I had a stubborn "spot" that kept lighting up a bit. Your information was interesting and I wasn't given that explanation. It was just suspected to be necrosis and we just kept an eye on the spot. It took several months to finally disappear.
I still have some suspicious spots in my liver but they have remained stable and haven't appeared to be metastatic.
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