All about Xeloda

Denny123

Divine- sure-anything soft. I can't wear slippers since I am too clumsy and trip. I just wear socks. But my house has carpeting, TG.

NinaCA

Glad you asked Divine. I have 4 pair of Dearfoams Women's Darcy Microfiber Velour Clogs. I bought on pair in a store, found my size, and then ordered many colors from Amazon. Their sole is good enough to wear outdoors (I sometimes had to wear them when shopping, the only things that were comfortable), they don't rub the back of my heel. They were/are wonderful for Xeloda days. I NOW have 4 pair of "Cozy Crocs", they are the Croc shoes with a fuzzy lining so there is no rubbing on the sides or bottom of my feet, or my toes since the front is wide. and my toes can spread. They are good for Rain and protect me when I bump into something. I have the tie dyed colorful version and get lots of compliments, as well as sedate gray, blue and ivory. Hope this helps. Nina

DivineMrsM

Thanks for the advice on the footwear, Denny & Nina! With colder weather and the furnace is running, the heels of my feet are much more dry and need more tlc. Plus my new onc (former one retired) is more observant of the hfs. My last visit she made me take off a shoe and sock and show her the condition of my feet! It’s a good thing, tho. I makes me want to take better care of them.

nopink2019

Hello group, I'm new to this topic. I took 1 series of X in 2019 and had to stop for severe HFS. I switched cancer centers and MO. After recent progression on AA, MO is returning me to X, but at a reduced dosage and 7/7. Still waiting for approval from ins. Until I started reading this thread I wasn't aware of things to ward off HFS except frequent aquaphor with gloves & socks. I read about cutting folic acid, but that is mainly vegs that I had thought were good for me, Maybe not now? I'll be eating some, but will cut back. Should I also stop multi-vit as is contains folic acid too? MO warned me about diarrhea, so I'm prepared for that. Other advice is welcome.

Denny123

nopink....I quit my multi-vitamins too. I use this site...FolicAcidNow.net. Or I google a veggie to see the amount of Folic Acid in it.

The veggies that I eat are carrots, potatoes, onions, cauliflower, peppers, squash, green and yellow beans, iceberg lettuce, peeled cucumbers and tomatoes.

I have used silicone socks and food service gloves with Aquaphor at night. Cotton sock and gloves just absorb the ointment so the hands and feet get too dry.

vbishop

Test

Nkb

nopink2019- with the 7/7 schedule and a reduced dose, my HFS mostly subsided- so I hope that yours does also. I wear cushy shoes to walk (HOKA one) and put Vaseline on feet after shower and wear bomba socks with not skid bumps to walk around in or wool clogs or Uggs slippers. I mostly notice that my heels are more slippery for yoga or walking barefoot - I use a pumice stone after showers.

vbishop

I did an interview for Breast Cancer Awareness in October. In case you are interested, here it the link to my blog post that includes the link to the interview (it is near the bottom of this short post):

https://vjbishop.blogspot.com/2021/10/pink-song-by...

Sorry, I just noticed I posted this two pages ago. Please ignore if you've already visited.

nopink2019

Nkb & Denny - Thanks for your experiences. I'll start X next week. I've been making a list of things to consider as I really hope this is effective. I've noticed very few who have returned to a CDK4/6 or mTOR inhibitor after progression & I'm concerned that I'm running out of options. So I'm determined to do everything I can to make this work for a while....long while.

Denny123

Nopink----I was originally ER+, Pr-, Her2+++, but my recent chest node recurrence changed me to Her2- Somatic.

We have a lot of options left, as I was told by my onc just yesterday.

Nkb

no pink- my MO told me IV chemo is next when Xeloda fails. I asked my UCSF second opinion doctor about cycling back to CDK4/6 inhibitor and she told me with the current data she would not recommend that. my MO says definitely not . I think if we can use an oral SERD or CERCA or something when they are approved-it might be worth doing it, I heard somewhere that the CDK4/6i fails due to the anti-estrogen failing so a better anti-estrogen could help that- I don't know. I am Her2 low so there are some possibilities there, but, I am bone only still-so probably not until it is approved.

nopink2019

Nkb - thanks for your update. I try not to jump ahead (especially @MO). But I did wonder. And last year on CDK4/6, then mTOR my drugs were so $$ on my medicare drug plan that I was shocked when I found out X is covered under Part B, not Part D, drugs. So selecting a drug plan for 2022 is very different w/o those expensive drugs to consider.

KBL

nopkin, I agree. I went on Xeloda generic just before going on Medicare. When I ordered, my copay was $36.40. Huge difference from Ibrance cost

Nkb

my plan did pay for the ibrance and the Afinitor-(the afinitor list price was $19,000!!- it is now generic I hear) the Xeloda is so much more reasonable thankfully. I have medicare senior advantage.

I am happy that my next PET will be after ASCO and really hoping that some wonderful options will come out of ASCO this year. I do feel like lots of options are just around the corner-

KBL

Is anyone willing to share if they are on a roller coaster with their emotions on this drug? I haven’t felt this weepy and crappy for a long time. I’m just going to be at the end of the fourth week, 7 on 7 off. I go to the doc on Monday and will discuss it with her.

IntoLight

KBL, a couple of weeks ago some of us discussed this very thing about X. It did increase my emotions and made me short-tempered. Several others agreed. I believe we agreed it was the MAdame X. Now that I am off the drug, I have returned to my normal, sweet self

nopink2019

hmmm, should I warn my DH before I start X, or see if he notices? 😳

Nkb

I noticed feeling sad and wondered if it was the drug, life, covid etc- still my sweet self though 😉

I am better now so maybe it is a temporary issue?

KBL

Thank you. I’ll go back and try to find what was discussed. I can have a few bad days but multiple in a row is not like me. Ugh. I don’t like it. And I sure know my husband’s doesn’t deserve this

Denny123

I have been on X for almost 4 years with no emotional problems. But I am on some Facebook groups for X and they often complain abobout it.

Pbsoup

hi. New here. About to start X on Monday due to progression to Liver from bone only for 2.5 years.

The emotional thing is disconcerting. I had a terrible time on Tamoxifen—it caused a major depression and I had to stop taking it back in he good old stage 1 days.

Although that was estrogen related whereas X doesn’t work that way. Oh well we’ll see. At least forewarned is forearmed. Or something like that.

illimae

KBL, no issues like that for me in X but definitely when I was on Tamoxifen. I had frequent episodes of tamoxifen rage and would boil with anger of pretty minor stuff like DH randomly placing objects that ended up being in my way of leaving food wrappers on counter tops instead of throwing them in the trash. But any med that blocks or lowers estrogen could fit, I’m beginning to think that it plays a big role in calmer emotions and may explain why a lot of older (post menopausal) ladies are cranky, especially after years of tolerating BS.

KBL

Thank you, Mae, for the info. I do feel my emotions are getting the best of me, but it doesn’t help this month that I’ve had some nausea and am so tired. I think this round is just having fun with me. I am thinking it will get better.

Pbsoup, I hope you don’t have these issues, and I know there are plenty of women who don’t. I’m still glad I’m on this med because my numbers were better last month

KBL

Okay. So two of my tumor markers this month fell to their lowest level since diagnosis. My CEA has never been in the normal range and two months ago was at its highest, 8.5. Today it was 3.2, normal range. This is after four weeks on Xeloda. I’m so excited. The second number is the 27-29. Two months ago it was 374, last month 314. This month 252. Another low. Yayyy me. The third one, 15-3 went from 101 to 208. Almost where it was at diagnosis. Why can’t everything head the same direction? Anyway, I have had some estrodial I was trying. I realize it’s estrogen, but I’m at my whit’s end in the sex department and was willing to try it. I have no idea if that’s what made that number go up so high again, so now I have to stay off it for a month to see what happens. Darn it.

Does anyone think the doubling of the tumor marker is from the estrogen cream? It’s just weird the other numbers came down so much. I was hoping for a triple

Denny123

KBL- I have no idea about the estrodial since I am old and happily living alone. But yay for the other numbers! I hope that your onc can find a solution.

vbishop

KBLA - My tumor markers have been out of control! After the first two cycles of Xeloda, my tumor markers dropped by 40% or more; but they are on the rise again. Sigh!

1. CA 27-29 Was 881, dropped to 436.8; now at 620.4
2. CA 15-3 Was 511.2, dropped to 183.50; now at 278.9
3. CEA Was 8.2, dropped to 3.6; now at 3.2

I am not on any estrogen, so I doubt if that played a role. I read recently that HFS can cause tumor markers to rise; not sure I believe that. I have a call into my doctor. I also know women who have commented here that if your feet hurt, then the Xeloda is still working. Anyone seen progression while feet still hurting?

I was hopeful that I could be on this medication for years, not weeks. My recent PET showed a decrease in all tumors across the board for the first time in 18 months (and I have a lot, several in various lymph nodes throughout my body, bone mets, liver mets, and brain mets). They did not see any brain mets at all with my last PET. Needless to say, I was shocked and disappointed when tumor markers started rising again.

IntoLight

vbishop, my onc doesn't make decisions by my tumor markers only as she says they can fluctuate with these meds and they weren't reliable for me anyway. She does look at trends. I had progression while on Xeloda with HSF symptoms but I did get a year (been off since June). I had six months of negligable active tumors while on X, almost totally disappeared. I get my first PET scan on Monday since switching to A/A. I will say it is a much easier med for me. I still lurk here occasionally to check on my friends here.

WANDERING

vbishop: I had a long conversation with my oncologist last week about tumor markers. He said he doesn't rely on them much unless you have a certain type of cancer (he specifically mentioned colon since he has specialized in that). He takes more interest in scans which for me have been stable. My tumor markers are all over the place also - not just on Xeloda but all kinds of other meds. I took a great deal of relief in what he said about tumor markers versus scans. I really like this guy but he is a locum tenens and left to return home on Monday. He said he might be back in the summer. Being gone from here in winter Is not all bad. It was 17* at my house this morning. Keep your chin up - lots of new stuff coming out to help us as long as we stay positive and hang in there.

KBL

Denny123, thank you!

vbishop, I'm sorry your markers are wonky as well. I think if it were me, I'd give it a few more months. I actually don't have any HFS per se. My hands are really dry right now, but I was washing them like crazy because my husband had a cold. My feet have been really good. I had one peeling moment but not bad.

I may just go ahead and keep using the estrodial for now, but I'm going to give it some thought first.

The problem with lobular is it doesn't always show on scans, which I know all too well, so tumor markers are one of the things we with lobular tend to watch more.

vbishop

Thank you IntoLight and Wandering. I feel sooo much better after reading your comments! I continue to have hope. Hope, and faith are so important during this journey! I take comfort that both of you had fluctuating tumor markers throughout your treatment.

My doc does not rely just on tumor markers either but so far when we have seen a continued spike, something is wrong.