Billirubin level higher on Xeloda?

[MacroMom]

Wondering if anyone else on Xeloda has had billirubin levels rise? Higher billirubin is listed as a side effect and since Xeloda is still knocking back my CA 15-3 numbers I want to stay on it. I don't have any other side effects of high billirubin, like jaundice, but last time I saw my oncologist she was a little concerned about the rise. I have liver mets but the liver enzymes are still in high normal range. Thanks!

[barbarac76]

Have you been on the same dose since you started Xeloda? I haven't had an increase in bilirubin, but I did have some issues with my feet (extreme redness and blisters). My oncologist decreased my dose by 500mg from 1500mg twice a day to 1500mg in the am and 1000mg in the pm. It helped a lot with my particular side effect. Did she discuss decreasing your dose? My oncologist told me that it's common to start at a higher dose of Xeloda and decrease around the 6-month mark. My last PTscan showed stability even with the decrease in dose.

It's great that your CA15-3 continues to decrease. I haven't had any significant drops. Hovers around the same number - up and down a few points.

Also, I have from time to time discussed side effects with the specialty pharmacy that supplies my Xeloda. The pharmacists have been very knowledgeable about side effects.

[MacroMom in reply to barbarac76]

Thanks Barbara, this is so helpful! I’ve been on 1300 mg am/pm since mid-June, so just a little over your reduced dose. I am noticing slightly more foot sensitivity as the weeks go on so it’s great to hear that reducing your dose didn’t affect your scans! A stable CA 15-3 sounds good to me too, I won’t mind if mine stays around 150 for a while. The important thing is I’m feeling good; hope you are too! So you take Xeloda for 7 or 14 days at a time? For my feet I alternate Udderly Smooth and Emu Oil with MSN and glucosamine. If they get really sore I mix in some arnica too. My feet have never had so much attention! I also love BZees shoes for comfort and coolness.

Thanks for being my Xeloda buddy!

[barbarac76 in reply to MacroMom]

Glad to hear you're feeling well. I feel the same way, better than I have felt in a long time.

I'm on a 7 days on/ 7 days off cycle. I've heard that some people do 14 days on, 7 days off (not where I am being treated). Even though the dose reduction has helped with the foot syndrome, there is no way I could take Xeloda for 14 straight days. By day 7, the redness intensifies. It lasts for the first day or two of my off week. I think I'll try the Emu oil. Sounds like it has helped you.

[MacroMom in reply to barbarac76]

I agree about the schedule, 7 days feels like the limit for my feet too. No problems with hands, just feet. Especially if I walk on an uneven surface. I’m seeing my naturopathic oncologist too next week, I’ll let you know if I hear any more good advice!

[beachlover65 in reply to MacroMom]

Hi! I just started my second round of Xeloda. I do 14 days on and 7 off. Today is day 7 of the on cycle and my feet really hurt. I am using udderly smooth, but I may check out the emu oil you are suggesting and the BZees shoes. Any other suggestions? Every step hurts. I've already gained so much weight, I'm afraid I'll gain more if I can't even walk! Thanks for any advice! We need to hang in there!

[MacroMom in reply to beachlover65]

Hi beach lover! I have a few more suggestions, some that you can do and some to perhaps ask your oncologist about.

When my feet get really sore and/or hot, I stick them in cold water...a basin outside (when it was warmer), or in the tub, or I just sit on the bathroom counter and stick them in the sink! Being immersed in cool/cold water seems to really help back off the pain for a while. For pain I have also applied arnica cream; it's good for inflammation and helped.

I've noticed that my feet get more sore when I am walking on uneven surfaces, like a gravel path, without good support. If I want to walk someplace that isn't paved I wear a hiking boot with a thicker sole, and have cooling insoles.

My feet and hands are generally cold and I think that has helped minimize the side effects. I noticed more problems on the really hot days of summer. I try to walk 30-60 minutes a day, but the few times my feet were too sore I just didn't. They seemed to recover pretty quickly.

I take 1300mg morning and evening...what dosage are you on? I've read that temporarily reducing the dosage can help with the foot pain. You may also want to ask your oncologist about going on a 7 day on/7 day off schedule. My oncologist trained at Sloane Kettering when they studied this schedule and found it to be as effective as 14 on/7 off, with fewer side effects. I've been on it since mid-June and my CA 15-3 went from 598 to 150. I hope that means the Xeloda is doing a number on my liver mets. I hope it works well for your too, and for a good long time!

[beachlover65 in reply to MacroMom]

Thank you for all of your advice! I am taking 2000mg twice a day. I may need to adjust the dosage. Which do you prefer - the emu oil or arnica cream? I'm wondering what to try next. So happy about your numbers!! My CA 27-29 went down 10% after the first round. I'm happy with that!

[MacroMom in reply to beachlover65]

I go back and forth between Udderly Smooth and the Emu Oil, am and pm, and just use the Arnica if my feet are especially sore. Regarding dosage, one of the reasons I chose Xeloda as my next treatment is that the dosage is determined based on weight or body mass. I weigh about 130 lbs which may be why my dose is 2600/day. I think it's still worth asking your oncologist about, as well as the 7 days on/7 days off option. Even a temporary lower dose may help your feet. But 10% down after just one round sounds great....reason to be happy!

[MacroMom in reply to beachlover65]

Do you have the book "The Insider's Guide to Metastatic Breast Cancer"? There is a section on Therapies for Hand Foot Syndrome. Two other creams that are recommended are Aloe Vera and a Vetiver Lotion. That reminded me that I also put a drop of Vetiver essential oil in the arnica when I use it. This was recommended by my acupuncturist. I also take Vitamin B6. There are several other things recommended in the book too!

[beachlover65 in reply to MacroMom]

Thanks so much for the advice! So far I am trying to handle this without a dosage change.

[barbarac76]

Hi. I was wondering how you were doing with the Xeloda. Last time you posted you were concerned about your bilirubin.

I'm still on Xeloda and tolerating it well, but I had a strange occurrence that showed up on my last PTscan. I am ER+ HER2-. A new mass (1.2 cm) showed up in my healthy (left) breast. A biopsy was done. Turns out the new mass is ER+ HER2+, which doesn't respond well to Xeloda. After many discussions with surgeons and other oncologists where I am being treated (Memorial Sloan Kettering), the consensus from the group was not to surgically remove the new mass, but to treat it with Herceptin while I continue with Xeloda to treat my original MBC. I won't have another scan until late January. I was very anxious and disturbed about the whole situation initially, but things have calmed down. I feel really good.

Hope you are doing well. Haven't seen many posts about Xeloda recently.

Barbara

[MacroMom in reply to barbarac76]

Hi Barbara! Thanks so much for reaching out. What a shock...just when we get used to one diagnosis a whole different one shows up. I'm glad you are at MSK, I hear so much good about their work.

I've been wondering the same thing as you about stopping hormone therapy on Xeloda. I had a great run on Letrozole, and though it wasn't enough to hold the cancer back completely I still think it helped reduce my estrogen levels. I found this study interesting, from Jan 2019....they are using low-dose Xeloda plus an aromatase inhibitor for MBC. This talks about using it on newly-diagnosed MBC patients but I plan to ask my oncologist about adding Letrozole back to my regimen too.

futuremedicine.com/doi/full...

I'm still doing pretty well on Xeloda. I had more foot burning/peeling when I traveled to a hotter climate in November but now that I'm back in chilly Oregon it's getting better. My CA 15-3 ticked up a little last month but I'm hoping that's a bump not a new uphill climb.

I've been hearing more about immunotherapy for HER2+ breast cancer. I don't think a particular therapy is approved yet but there are a lot of clinical studies going on. May you have a good run with Herceptin while they figure this one out!

[barbarac76 in reply to MacroMom]

Hi MacroMom (sorry I don't know your real name).

So happy to hear from you and glad that you’re doing well.

I read the link you sent me. Makes total sense. Of the aromatase inhibitors mentioned in the study, I’ve been on letrozole (alone) and exemestane (with Afinitor). I have not been on Anastrozole (Arimidex). I see my oncologist in three weeks. I plan to ask her about adding an AI – either Anastrozole or going back on letrozole. Thanks for the information. I’d be interested in hearing your oncologist’s take on this.

Glad to hear you’re tolerating Xeloda. I’ve experienced more sensitivity with my feet also. I walked more than I should have when I visited my youngest at U of Maryland recently, but I recovered fairly quickly. Like you, I had more problems over the summer in the heat.

I’m optimistic about HER2+ treatments, although I must admit, I would prefer not to be dealing with two forms of breast cancer. At least the HER2+ mass is contained in my breast (for now). The good news about Herceptin is that it is given as an injection in the tissue every three weeks as opposed to an IV infusion, which is the older method. MSK opened a satellite center a few miles from my home in NJ, so it’s a quick trip and session.

I hope you continue to do well with the Xeloda. I would think that a little fluctuation in the CA 15-3 marker doesn’t mean much, but I understand your concern. I’ve experienced that throughout my treatments. I usually get a more significant drop during the first few months of a new treatment, then it hovers around the same level (up and down by a few points). Both my MSK oncologist and an oncologist from Weill Cornell (2nd opinion) have stood firm in discounting any small fluctuations in the markers.

Stay well and may we both continue to get a good run with Xeloda.

Barbara

[MacroMom in reply to barbarac76]

Hi Barbara! Thanks for the reassurance about CA 15-3 ups and downs. Historically mine have only gone down (on Letrozole, then on Xeloda) or up (when Letrozole gradually stopped working and on Ibrance). Hoping that next week's labs show another downward bounce! If not I'll get a CT scan before the end of the year, just to stay on top of things. The good news is I feel really good. My ND oncologist started me on a COQ10 formula a few months ago and, though it's hard to isolate the effects of one supplement, I have to say my energy has been great ever since. I take the ones called UBQH by Integrative Therapeutics. Not cheap but then what is?

I'll see my oncologist on Dec 31st (ring out the old year!) and also plan to ask her about restarting Letrozole, or one of the other AI's. She did her residency at Sloane Kettering so if you get a positive reaction from your oncologist it may help.

Wishing you all the best with Herceptin; glad it's just an injection too.

Hugs,

Patty

[barbarac76]

Thanks, Sandra. It just seems strange - developing breast cancer when I'm being treated for breast cancer. I was a little concerned one year ago when I switched from hormone therapy to chemo alone without a hormone component. Maybe that's the reason a new breast cancer mass developed.

[barbarac76]

Thank you Sandra.