All about Xeloda

Here is the trial showing that methylcobalamin reduced grade 2 hand-foot syndrome problems by half:

https://www.bmj.com/content/390/bmj-2025-084290

Methylcobalamin is sold over the counter.

@girlsptz, what dose of Xeloda are you taking, and how much methylcobalamin. did your MO suggest it to avoid neuropathy, or for Xeloda specifically?

• @threetree

Thanks so much for the clarification of your dose. I'm on the 2600 mg dose as well as of this week. Next week I'll be off and then another week at the 2600 mg dose. Following that I will have my PET scan to see if it is working. I started the third week of July but only at the 1600 mg dose because I have the partial deficiency of the enzyme that can cause increased toxicity because it doesn't breakdown the Xeloda in your bloodstream as it should. So even though I have been on Xeloda for 3 months when I get my scan my dose has been slowly increasing up with every month cycle.

I have read that as you say what we need to be cognizant of is the fact that the effects of this drug are cumulative so that definitely fits for you with the issues developing at the 8 month cycle. I think I am reluctant to go up beyond the 2600 mg dose but using the ASCO 2023 research on the 7/7 schedule for MBC it was based on taking the 3000 mg dose daily so if my PET is showing improvement then I may have to increase myself up to the 3000 mg daily dose. My oncologist is onboard with whatever I want to do so that won't be an issue. Like many of us I am trying to stay away from infusion chemotherapy and Xeloda is my last oral option. Decisions, decisions? I hope you get good results from your scans. Sending you positive vibes. Take care. Sandra

@girlsptz

Thank you so much, Sandra! ❤️ My oncologist finally agreed to let me try the 7/7 schedule! She initially wanted to reduce my dose from 2000 to 1500 mg, but I told her I really didn’t want to lower it because I’m worried about reducing the dose. So she agreed to try 7/7 first before lowering it. If it works, great! If not, we’ll have to consider reducing it. I’m really hoping the 7/7 schedule will make a difference with the side effects while allowing me to stay on my current dose.

I’m so glad you’re doing well on 2600 mg so far! I’ll be keeping my fingers crossed that your PET scan shows Xeloda is working. I completely understand what you mean about knowing the facts as a medical professional versus experiencing it yourself. It’s a whole different feeling when it’s your own health and future at stake.

I’m glad you’re getting out and enjoying your bike rides while the weather lasts! Sending you lots of good wishes for your upcoming scan. ❤️

Oh BTW my 2 scans are scheduled for the first week of November. Almost the same time as yours.

@ailurophile

I am so thrilled your oncologist finally saw the light and agreed to you trying the 7/7 schedule. I truly hope after you give your body sometime to adjust you will see a definite difference in how you feel and are able to stay on the higher dose. Fingers crossed. As you said you can look at lowering the dose if need be.

I have the rest of today and tomorrow left on my first week of the 2600 mg dose and I'm doing fine with it. Looking forward to my week off though as I think it does perhaps leave me more fatigued overall.

Yes our scans are quite close together so I will be hoping we both get to celebrate some good results. My oncologist called me yesterday just to check-in with how I was doing and as always asked how my pain was(I have very extensive bone mets from my skull down to my knees and everywhere in between). I told her I'm not the least bit concerned about my bones right now and focused totally on my liver. She said she always has both in her mind which I guess is good. Anyway the scan is the real diagnostic tool so I'll wait for that.

We are under a wind warning today and it's very windy outside right now so hubby tells me it's not safe to ride. Hoping it slows down later so I can get out. All the best to you and please keep me posted how you are doing. I am sending you positive vibes that the new schedule will work much better for you. Take care. Sandra

@girlsptz

You have a very savvy MO, I had no idea it could help with so many things!! I got neuropathy in both feet when I was recovering from a shoulder arthroscopy and it came on hard all of a sudden a couple hours after I added back Ibrance, which I did a week after the surgery. I've since assumed that maybe I was already low in vit B12 (these meds can deplete them) and that the surgery nerve block or some other meds put me in a very low B12 danger area. Its been years since then, and the neuropathy has greatly reduced, but it was an awful year before I could even tell that things were getting better. Now I have just a bit of numbness in one foot, in part because after testing accupuncture and exercise, which did nothing, I found that taking Jardiance (which lowers blood sugar) was a big help. Jardiance is now recommended for diabetes-induced neuropathy, and altho I am not diabetic, I guess getting rid of the peripheral sugar helps the nerves recover, regardless of the cause of the neuropathy. Based on all this info you provided here, I'm going to closely monitor my B12 levels going forward, and will start taking methylcobalamin assuming B12 levels are not high, as that apparently could also cause problems.

Also, I see this Voltaren arthritis NSAID cream can cause a 4x reduction in HFS symptoms, so using both could be really helpful, along with avoiding the folates. Have you had any HFS issues at this 2600mg dose?

@girlsptz @cure-ious Thank you for sharing the links on the B12 trials! Will discuss with my MO.

@ailurophile I’m happy to hear your schedule changed to 7/7. That made all the difference for me. Hoping for the best for you! Marcia

Has anyone here tried the Xeloda + Keytruda combination?

Hi Cure In the randomised X-7/7 trial, the median PFS was 5.6 months with 1,500 mg twice daily on a 7/7 schedule, versus 6.7 months with the conventional 14/7 schedule. The difference wasn't statistically significant.

But yes people seem to go much longer and with our previous experiences we will hopefully get a good run on this. Good luck adding in K and let’s never forget how well Judy P is doing. xx

@chico Well, hey, you know we seem to always be at the same step (even if I have to dance harder!), so here I go on X/K. And how come we haven't heard about more woman cured over all these years, its just gonna be Judy & Barbara for all time?! How are you doing, and are you on this 7/7 schedule? What is the minimum effective dose for X, I can't find anything about it?

@cookie54 Wow, that's so wonderful! I am trying X & K, but its a long shot. My TMB is high at 39, and PDL1 detectable at 10, but ER-positive and there's just not much data, tho I have ESR1 which may be a deal-breaker. The problem is, assuming TMs do eventually go down, how can you tell if the Keytruda is even working? This is like first stage, where you don't know the CDK4,6 is adding, you just take it. But the SEs here are more serious. Obviously for you, going for two-plus years, its definitely working, but you wouldn't have known that along the way, and its hard to go two years on a therapy where you don't know if its helping? Similarly, its possible you wouldn't need X anymore either? Like don't they sometimes have people go off of everything and deal with the cancer when it comes back? What side effects did you have the past two years?! Were you dragging at the end of two years K?! And what dose X keeps you going at this point (presumably its low?) Even for TNBC, its lucky to get a response like this!

@cure-ious I have not been offered the add in of Keytruda. I am assuming it is not an option for me but have to look into it. I wish you the best on that along with Xeloda. Marcia

@cookie54 Thanks. Thinking the rash may be anxiety related. I’ll share what I find out from new oncologist tomorrow.

@cure-ious So I understand what you're saying as far as not knowing if Keytruda is working. I was scanning every 3months and saw my lung mets diminish over time. Now what did they respond to Immuno or X or the combo. That's where I put my faith in science and clinical trials. I went for a second opinion when I was diagnosed Stage IV at MSK in NY and met the oncologist there who laid out for me the better outcomes adding Keytruda for 2 years with X. I was very fortunate not to have any side effects with Keytruda so I kept going for the full therapy. So going off chemo was never discussed as an option at this point but my dose has been reduced over the past couple years. Since my scans are stable and currently NEAD I am on 1,500 7/7, I now scan every 6 months. For me I'd rather be on a steady lower dose of X than trying to do damage control after a recurrence. I am an outlier at this point and I continue to tread lightly. So at the end of the day the risk was worth the possible measure for me and I guess I'll never know for sure if it added any benefit but something sure did! Is there limited clinical trial info for Keytruda and ER +?

@marcials1 Yes mainly TNBC PD-L1 Positive although I have read that it has been used in certain scenarios. Off label and clinical trial use and specific genetic mutations.

@cookie54 This far out, you are surely benefiting plenty from Keytruda!, but it'd be helpful to know in advance because it can have bad SEs. And there are clinical trials geared for people like you who do respond, eg, adding in things to prevent T cell exhaustion or reverse immunosuppression, which could lead to additional therapy lines in the future. Moreover, responders have been found to have an overall survival benefit as well, so its all good!

@marcials1 I qualified for Keytruda based on Foundation One reporting a high tumor mutation burden and some modest PDL-1 expression. Hope Rugo at ESMO will be presenting a phase 3 trial of ER-positive patients treated with Keytruda and Xeloda, so we should see some hard numbers about response rates, etc

@aj Wow, its hard to imagine such a long time on Xeloda, any idea why its lasted so long?

@chico So far, so good- I got sick on Orserdu and Verzenio, perhaps they weren't getting degraded efficiently (both compete for Cyp3A in the liver) causing over-dose?; I couldn't eat or digest squat, and didn't want to drink much either, big fatigue, lost ten pounds fast. (Harder than taking V with Faslodex, which gets digested in your butt!) Once I went off, it all went away quickly.