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All about Xeloda
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Hello X ladies. I have had bad headaches for a few days and also lost some posts I thought I sent so will try to get back in the swing this week. I sometimes get confused with posts. Chemo brain. Looks like lots of things to catch up on. If you have sent me some messages I apologize for not redponding but I will! Better late than never. Hope you all had a nice weekend and a great week ahead. Marcia
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How are you doing?
Thank you so much for thinking of me! It really means a lot. I’m actually feeling really good! I even managed to go to a Halloween party last night, dance for three hours straight, and enjoy some food! 😂 Fingers crossed this schedule keeps working well for me!
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@ailurophile - That Halloween party sounds like lots and lots of fun. You must be doing well to be able to dance the night away and enjoy good food. I really do hope this 7/7 works much better for you. Keeping my fingers crossed. Thanks too for the nice words.
I'm going to try and continue to catch up with thos 50 posts I missed. I'm about half way through, but have to take a break from all that to take care of some personal business today. I've got so much brain fog that all these smaller tasks have not gotten done and now it's all urgent. Ugh!
Hope everyone has a good week - wow, November is upon us.
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So wonderful to hear that you felt well and was able to get out and party. I can't remember the last time I danced. I imagine you have brought back great memories for many of us. Hopefully that 7/7 schedule will continue to make you feel better. I'm in my 6 hour fasting time prior to heading in to get my first PET since being on Xeloda. Fingers crossed that it is working on my new liver mets. Have a great week. Sandra
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Hi Marcia. So sorry to hear that you have been dealing with headaches. They really are horrible. I hope that they have resolved by now and that you are on the mend. Thinking of you. Sandra
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@girlsptz Praying for a good PET scan today and that your liver mets are either gone or shrinking.
@ailurophile Such a happu post that you feel really good! We all look forward to those days.
My housekeeper comes today so I am motivated to put things away that seem to accumulate between her visits. I long for my previous housekeeper who did everything. This one (and the others I interviewed) just does the basics unless I want to pay for a deep clean every time—no thank you. I don't need that. I just need a thorough cleaning of the highly used areas. I only have about 10 minutes of energy at a time between long rests thus the need for help. My PA said I need the rest and not to push so this is how I roll. My sister arrives Thursday for a five-day visit. She doesn't care about the house but I feel more comfortable with it done. Her visit falls at a good time between treatments too and the weather looks to be lovely Colorado Fall weather without any snow. Yay!
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@intolight Thank you for the well wishes. It means a lot. I'll update when I get the results. It usually takes several days before it appears in my portal as the process here is to have 2 dedicated radiologists read the scan independently and then come together to discuss if there are differences. Only after that is it posted. It makes sense but I hate that it takes longer to see the results. Oh well that is the process and I will respect it.
I live near he Rocky Mountains in Alberta and our weather is cooler now too and we had a small amount of snow on the weekend. Hoping for a nice fall, although most of our foliage has dropped now. Enjoy your visit with your sister. Something good to look forward to. Take care. Sandra
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Thank you, Sandra! I’m keeping my fingers crossed that your PET scan brings you good news and that the Xeloda is working beautifully on those liver mets. Sending you lots of positive thoughts and wishing you all the very best. Please let me know how it goes!
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@girlsptz Headaches tapered off thanks. I am at my tripple scan appointment today yippeee! Got my CT and MRI done now just waiting a few hours to go in for my bone scan. Things could be worse and I am lucky to be able to walk in and out by myself so I will take that as a good thing. I have different radiologists every single time I have scans done. Gets confusing trying to decipher each one’s terminology and their way of looking at progression or stability. So taking a little extra time is worth the wait for results. You are lucky! Enjoy that snow! Marcia
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@ailurophile so happy the 7/7 is working for yo and you are feeling better! And dancing! Yes! Enjoy time with your sister! Marcia
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@marcials1 - Here's hoping and fingers crossed 🤞for great scan results! Glad to see you are feeling a bit better now too.
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@chico hi there. Getting back to you on my new oncolgist response to pfs on Xeloda. She gave the standard 6 months answer but also said it is a very individual response to the person's type of MBC, overall health, etc. My markers went down again on the 6 month mark but not as much as they had been. I am getting all my scans done today so we’ll see by the end of the week what that looks like.
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@cookie54 @cure-ious thank you both for your info on Keytruda. My onc said that my next line of treatment may be Enhurtu. I do not know if that will be in addition to or in place of X . I need to look into that. I thought I had read that Enhurtu is only used as a first line of treatment not after other others stopped working. Again, I will have to look into this. I have heard that it is absolutely no fun at all! Marcia
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There have been several studies showing that adding an anti-estrogen significantly improves the response to Xeloda, here is a retrospective analysis also.
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@marcials1 Hi Marcia. Relieved your headaches went away. Also glad that your new oncologist is getting her starting baseline scans all out of the way. I hope you get good results that show Xeloda is working for you. It's nice to get them all over on the same day too. Enhertu would be next up for me as well after Xeloda fails. My qualifying factor is that I am HER2 Low. Giving them together is not part of standardized therapy but I did read that the combo is being looked at in clinical trials.
It's still cool here today, no more fresh snow and I hope that stays the case for a while yet. I'm hoping that perhaps I might be able to squeeze in a few more bike rides for the season but I'd like the temperature to be warmer than right now(which is just around freezing).
Please keep us posted when you get your results and I'll certainly do the same. Take care. Sandra
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@marcials1 yes I am sure that your Onc is right there are so many factors that contribute to why one person achieves a long pfs and another doesn’t. I hope your scan results are good. My scan after 6 month on X is next week I so hope that we both do well.
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@marcials1 - Enhurtu would likely be the next option for me too, and like you, from what I've read, it doesn't look like a pleasant experience at all. I hope they just keep trying to find some better things, regarding both effectiveness and tolerance.
@chico - Good luck with your scans next week. I've got my fingers crossed and will be thinking of you.
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@threetree thank you I will post when I get results. How are you doing?
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@chico - Hi, I am going to assume they will be good results that you post. Fingers crossed.
Re how I'm doing, I've got a lot of ups and downs. Lots of fatigue and some digestive troubles. I've been on the dose reduction (2600 like you) for maybe 2 months now, and hoping with time it will be more noticeable. My feet are less sore, but they never were that bad. The fatigue and brain fog, plus the digestive issues don't seem to be a lot better at this point, but I figure that it took 8 months of cumulative drug effects to get to the point where I needed the dose reduction, so I'm assuming it will take a while yet to notice any difference with a reduction also.
I do enjoy getting out for walks most days, and had a nice "after the rain" walk this morning that was quite nice with all the fall foliage, and colorful leaves on the ground.
Hope you are doing well!
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@threetree i am sure that you are right the build up of 8 months on X and then a dose reduction probably takes our already battered systems a bit of time to sort out. I hope you at least begin to feel less fatigued very soon. This is a hard road to travel but still getting out for gorgeous autumn walks makes the fight worthwhile. I have a dog so we march across the fields everyday however I have to stop every so often as I now get breathless but I am thrilled to at least be still out there. Hope you feel a bit better soon.
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Re the methylcobalamin form of vitamin B12; after the discussion here I got some and gave it a try for the last couple of days. I think the dose I took was too much, as have been having some really vivid not so nice dreams the last couple of nights. I also increased the dose yesterday, and had a longer, deeper bad dream experience last night. It probably didn't help that I also had some clams yesterday too. This morning I read that a 3 oz serving of smoked clams can have as much as 660% of the RDA for B12, so I think I'm going to cut back. I eat a lot of fish and I think that when I can eat normally and don't have the indigestion issues that send me to mostly broth and applesauce, I can get enough B12 from my diet. I do think the supplementation might have helped with some of the nerve pains and tingling I can get with this Xeloda though. I will keep experimenting, and try a lower dose, because I do think there is some benefit for some of the hand foot type problems and what's called "dysesthesia".
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@threetree thanks! I received my bone scan and skull/brain MRI and both are stable as far as I can tell. I’ll get my oncologist input on November 18. I still do not have CT scan results and of course those are what cause the most anxiety. But fingers crossed. Thanks again for your good wishes!
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@threetree yes I am hoping for both of us that Enhurtu is not as hard on us as I’ve heard but even more so I hope we get another option. Even better yet, let’s hope X does it’s job for us for a longer period of time.
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@girlsptz hi. As you may have seen in some of my other posts, I have received MRI results and bone scan results and they both appear to be stable as far as I can tell. Having different techs or radiologists (?) reading results every time means different med terms and different ways of looking at comparisons. I am HER2 low now also. I am 1+ on the scale. I am hoping we both get good results from X for a longer time before we have to go the Enhurtu route. Hoping your scans show no progression your liver mets. Marcia
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@cure-ious I read your link on adding the anti-estrogen to Xeloda but it appears it is for HER2- only? I was HER2- but have since been diagnosed HER2 low positive. I think I’ll ask my oncologist about this on my next visit. Thanks for the link. Marcia
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@marcials1 - Congratulations on the "so far" results. Fingers crossed that what remains will be good too. (I too find the way that different radiologists write up their reports interesting and confusing. I just google a lot of those terms, if I don't already get the gist, and then for further information. Usually that's good enough, but then sometimes I also ask the onc for clarification at my follow-up visits.
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@marcials1 Hi Marcia. Congratulations on your stable MRI and Bone Scan results. That's such a relief. Hopefully your CT result will come in soon as well and be stable. The fact that your tumor marker is still trending down is a good sign. I just came back from getting my labs done so I'll see tomorrow what my marker is doing. Haven't received my PET results yet so patiently waiting. Tolerating my 2nd week of 2600 mg well with no side effects so I am pleased with that. Take care. Sandra
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I imagine your MO is familiar with this since these trials done long long ago, before anybody knew about Her2-low etc. For example one trial compared AI, Xeloda or the combination for firstline metastatic treatment, these were in the days before CDK4,6 inhibitors, and I think this a combo was used for some high-risk early stage patients trying to avoid metastasis- situations where the cancer was super estrogen-dependent and the trials were getting like a doubling in PFS benefit. Nowadays we don't usually see people taking Xeloda until the cancer is deemed to be more-or-less endocrine-resistant, and presumably there would be much less benefit in adding an anti-estrogen. Given that no drug company is going to make any money testing Xeloda in new trials, we won't be getting any new data, but now we have stronger anti-estrogens, so maybe it would help. It could be tested on an individual basis, assuming one has accurate TMs, ie try it and see if adding an anti-estrogen helps when X is starting to fail, and/or when you need to dose-reduce to avoid side effects…
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@cure-ious, I was on Faslodex and Xeloda at the same time for over 2 1/2 years. So sometimes anti estrogen therapy is done with Xeloda.
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