Experience with Capecitabine?

[Winner123]

My wife has been offered "Capecitabine" oral dose 1000mg. Can anyone share good and bad experience with this for TNBC please? We have mets to lungs. Thank you for sharing. XXX ♥️ Leo

[Iwasborntodothis]

This is also called Xeloda and there are tons of posts about it. I am on my 8th round and it is not as scary as it sounds and I am having great success with it.

[Hidden]

Hi Leo -

Forgive any repeat - I think I shared some or all of this with you a little while back - but my sister has had metastatic TNBC for 6.75 years.

She was dx'd with mets to her sternum, did chemo and then rads for that one tumor. Some time later, she got mets in her right lung. Her doc @ Duke, since retired, had them removed by a surgeon, as opposed to biopsying them. She was then NED for about 2 years, at which point more mets in the same lung cropped up. Since she had had success with the surgical removal (lung wedge? I think same as my hero RBG had?), they again removed a "wedge" of lung to get rid of the mets. That was 2.75 years ago...and she's NED since then...

Leo, I'll admit that I was reluctant to share her story because I know...we *both* know...that she's been incredibly lucky and most women in her situation don't have the options she had. But decided to share the info just in case something similar might be an option for your wife...

As I mentioned in my response to an earlier post of yours (again, forgive the repeat, but I *know* I can't process or remember things), she exercises regularly, like run/walking for a long time and hand weeding her large lawn...she prefers this to chemicals and I think it's sort of meditative for her, but it also works some large muscles...Plus she is nearly vegetarian (eats some locally caught seafood outside of veggies) and, I recently asked her to what does she attribute her great course of disease and she said "Sleep". She sleeps as much as she feels she needs to...But, I don't know if this is supported by science? Maybe it works for her because when she's not sleeping, she's working her muscles?

In any event, my *very best* wishes to your wife...It's a tough row to hoe, my heart goes out to you both...

Lynn

[Winner123 in reply to Hidden]

Thank you so much for your reply. We've not been offered surgery to remove Susie's as it's in the upper hillar, we've been told the tumor can't even be ablated there so I'm guessing it can't be surgically removed but that is a guess, I will find out for sure, thank you. If I understand correctly, your sis has had no chemo for lung mets and is still ok after nearly 7 years? Susie has a cough as the mass is in the upper hillar, we think we need to address the mass as it makes her chest hurt and causes a cough. We don't know how to do this without chemo ATM, we also really don't want chemo but we don't see many options ATM.

[Hidden in reply to Winner123]

Yes, no chemo after the original post-dx treatments...Her mets were to her lower lung, so I guess (?) that's an easier area from which to remove a wedge...And as much as we don't look forward to chemo, it is obviously an important tool...My sis has done no chemo because there seem to be no good options for her (from what i understand)....She'd done some chemo at the time of initial dx 11 years ago and then more chemo at mets dx...Her doc tried to get her into some other, new chemo trial several years ago but the characteristics of her cancer made her not a candidate for this.

I do hear that there have been some good developments w/ treatments...maybe immunotherapy? Maybe this is what capecetibine is?....but this makes me hopeful for my sister...*and* your wife!

Wishing you the best with it!

Lynn

[Andibo in reply to Hidden]

We are at Duke too. I think I may go to the oncologist who picked up a lot of your wife's patients when he retired!

[Hidden in reply to Andibo]

Oh, wow! My sis doesn't have name yet of doc to whom she's been assigned, but she'd worked with Dr. M. for 11 years *and* he was my secondary onc for past three, i.e. I would consult and/or see him a couple of times a year!

I'm waiting to see how my sis likes the new doc before I set something up...

[Andibo in reply to Hidden]

Are you at Duke Women's Cancer Center?

[SeattleMom]

Hi, Leo!

I’m on my third cycle of Capecitabine (aka Xeloda). Try searching either name in the search link above; and you’ll likely find lots of info regarding both the side effects of this treatment and recommendations for dealing with them.

In my particular case, I developed a very sore mouth and tried many treatments simply researching on Amazon. I found the inside of my mouth just burning from both toothpaste and mouthwash. Finally landed on a winning combination—Squigle toothpaste and Prevention mouth rinse—both available on Amazon. They were lifesavers!

In addition, your wife should always take the pills within one half hour of eating her morning and evening meals. It helps to prevent a queasy stomach.

God bless you for researching on your wife’s behalf and God bless your wife on this journey!

Linda in Seattle. 💗💗🙏🏻🙏🏻

[Winner123 in reply to SeattleMom]

Thank you so much for your reply. May I ask how long a cycle is please? Have you seen any tumor mass reduction? We need something that will reduce the mass as these are causing her pain and discomfort. Having a continuous cough in Covid world is horrible, I'm desperate to try to help her and I feel so helpless.

[Chrissie-Mac12]

I’m on Cape at the moment and it has been great at shrinking tumours. I have got hand and foot syndrome but manage that well rubbing in Urea cream. I am on 1000mg morning and night. I’m up to cycle 8. Unfortunately I now have advanced liver disease from all the chemo and drugs so running out of treatment options after this. I was diagnosed de novo MBC in September 2018.

[Winner123 in reply to Chrissie-Mac12]

Hi. Thank you so much for your reply. It's sad to hear you are having liver trouble, that's one of the things I'm worried about for Susie. We all know, chemo is very hard on the body. I did read the liver can completely repair itself in a few months! Is it possible you can stop chemo and try lots of homeopathic remedies whilst doing a full on liver detox (I've read fasting, grape fast, water only fast for 36 hours then a juice only diet for 28 days with Jason Vale, super juice me). Sorry for suggesting this, it's just one of the many many things I've read. Also read FIR heat blankets are great for liver detox, sweat it out of you without having to move! Thanks again for your reply, I hope I've not spoken out of term with my suggestions. X ❤️

[Chrissie-Mac12 in reply to Winner123]

Unfortunately the damage already done to the liver is irreparable. I am following a no added salt diet as salt is bad for when you have liver disease. My liver is described as “small”. Sadly that’s what’s going to get me in the end. Thanks for your suggestion. I appreciate the feedback. X 💕

[Gorgeousness]

Hi. I’ve been on capecitabine for more than a year now and it’s working fabulously - shrinking liver Mets - some totally gone and others halved in size. My one issue is the condition of my hands and feet. Red, sore, and fingers curling due to the pain. Some neuropathy, but that’s the only side effect. I work full time and it’s very manageable.

[Winner123 in reply to Gorgeousness]

That's great to know, thank you for your reply. X

[Gorgeousness in reply to Winner123]

HiGhly recommend it - very tolerable abd for nec- very effective. Good luck x

[queeneee in reply to Gorgeousness]

Hello,... what are your tips for coping with sore feet and hands... ?

[Gorgeousness in reply to queeneee]

I have quite red hands and feet on my week off every cycle. Must be when it escapes from my system! Dry hands. I sleep with lanolin and gloves on. Zinc oxide helps calm them. I’ve just found la Roche posay which also helps. I have a sauna which I use but always have ice blocks on my hands/feet. Loads of water each day and walking. I’m yet to nail it and have perfect hands but I’m getting there. What do you do?

[queeneee]

I am on my second round of cape. I do 'pulling' with coconut oil daily prophylactically, my mouth has occasional sore bits. I make my own kefir and take it daily to help my stomach I was on 1500 twice a day and it gave me severe stomach pain. Down to 1000 twice a day and stomach pretty much normal. - still take kefir. Sore feet - cycling helps a lot and walking.. but not so far that your shoes rub your feet a lot. I have a scan end of this week - but I feel it is working and I feel good!

[Tolife_18]

I’m lucky to have a pool and got wide steps this year to easily get in and out. But I mostly float (and sometimes nap) in the water rather than do active laps. Still it’s very therapeutic and makes me happy. A glass of chilled wine and a small ice cream after that makes it even better. 😊

My happy place

[Building-strength]

Hello there, Sorry to hear you have to go through this. I'd like to add that you've landed in the right spot with this support group. I found them helpful the first day I signed on, just knowing that we all have similar experiences and living is what we do best. I was diagnosed with mbc in August of 2020 at a late stage with multiple tumors throughout to my liver. I honestly didn't think I'd make it this far but I'm still here to God be the glory and so are numerous individuals on this site for years. My oncologist started me on Xeloda right away. I took it for 6months it did exceptionally well. The side effects weren't so good. My skin got darker, I had hand and foot issues and was tired a lot. My hands and feet pealed and were very dry. I switched hand and foot creams almost every two weeks they all worked initially but stopped. I bought cotton gloves from amazon and wore them most of the time to keep the moisture in and that helped a great deal. I'm currently on second round of Ibrance and keep up with my bloodwork.I worried all the time with every symptom as well not knowing if my health was failing but I had to change my thought process. Speak positivity over your life. Most symptom you have are from stress. Yes get it checked out but don't drown in it. Be well