Capecitabine - new treatment

[Ntash01]

Hi all

MRI shows good response to liver and femur on fulvestrant and zometa, but highlighted an underarm issue a month or so ago. Following guided core biopsy and comparing last MRI to most recent one, onc decided to switch to Cape. My 3rd line of treatment since 2020, she said I could continue on fulvestrant if I wanted to for another month, but her recommendation was to change to prevent any possibility of further spreading - she knows best!

I must say I’m dealing with this news pretty well but peed that I couldn’t remain on my butt jabs a bit longer as it was a fantastic treatment, really healed my body after ibrance.

I’m dreading taking cape but obviously I must! The lump near my shoulder blade is so obvious now, I will now have to force myself to eat a proper breakfast (meds to be taken with food) and really ‘look after my body’ so it can cope with chemo pills. Can’t believe I’m still in denial 2.5 years into MBC - but denial works for me - what works for you?

Any advice re cape would be very helpful

Nx

[Silver126]

Capecitabine is a good medication, unfortunately it worked for me only seven months. I felt much better than on Ribociclib and letrozole and had actually no side effects. Take care of your hands and feet, a good hydration is needed because of hand foot syndrome that occurs very often. As they probably told you you should take the tablets 30 minutes after meals

Best whishes

[Ntash01 in reply to Silver126]

Thank you - very encouraging. I do hope I manage to get the same experience as you re side effects.

I’ll be sure to look after my hands and feet starting from now - I’m usually quite good at moisturising as I hate the feeling of dry skin.What treatment are you moving onto now - if you don’t mind sharing?

Best

N

[Silver126 in reply to Ntash01]

Even though I’ve been nead in breast, lymph nodes and bones(I started in 2020 with one single met in my spine) for one year and a half, my recent PET scan showed liver progression. These bad news came yesterday during my onc visit. They suggest taxol, Monday I’ll get a second opinion in another cancer centre and we’ll see. Quite scared of Iv treatments

[Ntash01 in reply to Silver126]

IV chemo scares me a lot! Never experienced it before, I do hope an alternative is available to you before that option. Good luck with 2nd opinion.

[Debbigbang in reply to Silver126]

I am on Cap now will be starting 3rd, but the dose was too high and there were complications, I had to stop for a month things ok now so will be back on it Monday.

Deb

[Silver126 in reply to Debbigbang]

Did you get a specific blood test before starting Capecitabine? There is a slight percentage of people who lack a particular enzyme that is essential to metabolize this drug. Moreover Cap can be taken with “metronomic use”, that means a lower dose every day without the week pause, and in some cases in addition to Vinorelbine.

Good luck 🍀

Teresa

[Debbigbang in reply to Silver126]

It's a milder chemo drug , so yes you need bloodwork when are starting each cycle.

Deb

[Silver126 in reply to Debbigbang]

Oh yes, but I didn’t mean bloodwork at the beginning of each cycle, I had them every 21 days. I meant a special blood test that’s recommended before starting Cap and says if your body can tolerate the drug.

Teresa

[Contrarielle]

Hi. I only eat a tiny breakfast with it and have had no tummy upset yet. 😊

[Debbigbang in reply to Contrarielle]

Yup!!! Small frequent meals are the trick!!!

Deb

[Ntash01 in reply to Contrarielle]

Having toast and half a banana - don’t think I can handle more. I’ll swap with a bowl of cereal when I get bored.

[Hm50]

Hi I’m on the second round of capecitabine and managing it ok. I have a breakfast sandwich and take meds with it then have a snack for dinner so I can eat a meal early evening to take second lot. I’m on 2300mg twice a day and I have mets to bones, spine and recently extensive mets in liver which caused the change to this med. I’ve read good responses to it and I moisturise my hands and feet morn and night to hopefully avoid the hand and foot syndrome. Please share how you manage meds and how you cope with it. Sending love and hugsHelen xx

[Debbigbang in reply to Hm50]

Wow !!! I was on 1800 mg and that was way to high for me. We are all so different with meds and dosages.

Deb

[Ntash01 in reply to Hm50]

First evening I waited until 9pm to eat & have meds as per the 12 hr gap between morning and evening… far too late, then your routine of eating early then a snack with meds worked much better thank you!

[Winner123]

We put Cape into empty pill capsules, I think it helped with mouth and stomach issues. Good luck with Cape. X

[Ntash01 in reply to Winner123]

Thank you, so far swallowing meds ok. I’m taking extra care with oral hygiene and drinking lots more water than usual to try and hopefully avoid mouth and stomach issues.

[Debbigbang]

I am going into 3rd cycle. Watch dosage and side effects, mine got out of control and I ended in the hospital for a couple days, my body is still recovering. But it is the only thing that has worked on my liver, over 1 cm healed. My liver was over 8 cm so I needed a kick ass med. Hopefully it will continue to work on my liver.

Just pay attention to the side effects, hands feet, stomach, diaphram nerves.

Deb ❤😁

[life8888 in reply to Debbigbang]

Hi Deb, I want to know more about diaphragm nerves. What are the symptoms? Thanks in advance!

[Debbigbang in reply to life8888]

Hi

Your diaphram will be tender to touch, the nerve starts around the C3 and C4 so that area is sore, like muscle sore. The other is in my case, pain in the left arm around should. Turner move a certain way there will be sharp pain.

I am working on stretching and exercising the diaphragm. Takes time, but I am noticing a difference when I do that. I also use heating pad on my stomach, diaphram area.

Deb ❤🙏

[life8888 in reply to Debbigbang]

I've noticed that I need to work to breathe deeply into my right lung on cape, but I took a break from for WBRT and my lungs are fine now. Currently on my on-week and wondering if the issue is related to the diaphragm. Thanks for the detailed response!

[Ntash01 in reply to Debbigbang]

Thank you Debs, nurse suggested to monitor my temperature too as this can be an indication of infection. She also gave me an alert card, if I were to go to A&E I shouldn’t have to wait too long- that actually freaked me out and I got so worried about taking Cape… what is this poisonous pill 🤣😭 literally crying and laughing.

I’m hoping the swelling near my collar bone will go down after first cycle or at least remain stable - I’ll guess I’ll have to wait for MRI to know for sure what’s truly happening.

Tc

[Debbigbang in reply to Ntash01]

This is a serious pill. I was creating it like ibrance or any of those types. Cap is more serious, you can't ignore the symptoms. My onocologyst said if it show up badly on your hands and feet it is also creating havoc inside. It did with me landed me 2 days in the hospital and I am still dealing with it's lingering effects, with diaphram nerves. My onocologyst said if hands or anything else, stomach pain, call my nurse, if it6the weekend and it hands, stop taking the pill.

Deb

[life8888]

On it for 8 months now. For hand foot syndrome I use urea based creams from hansaplast and I like the Onsen brand creams for during the day,also warm 5 minute Epsom salt soaks for hand and feet just to peel away stuff when the hands and feet get too painful. For nausea I have Zofran as needed,also ginger chews, peppermint ginger smelling sticks, and I started making a lemonade, mint, ginger, honey mixture that settles my tummy nicely. Cape decimated the different biomes I have on the skin, so I experienced smelly breast, receding gums and my first infected toenail because of it. Kefir and a probiotic help with that. Kefir also helps settle my tummy. Got a metradiozonole topical spray for the breast. Also trying some moderate amounts of kombucha to see how I feel. For constipation the nurse recommended 3 prunes as needed. For leg cramps I take magnesium or nuun electrolyte drink tablets depending on how I feel, also trying to eat a banana a day. Hahaha I didn't even realize I had so many side effects until I wrote this all down. I hope you have a better time on it. Best of luck to you!!!

[Debbigbang in reply to life8888]

What is your daily dose, if you don't mind me asking? I was at 1800 mg, too much for me. I was off for a mth, starting again, lower dose Monday.

Deb

[life8888 in reply to Debbigbang]

1500mg morning, 1500mg night, 1 week on, 1 week off. I started off 2000 mg morning and 2000 mg night, but I really suffered from nausea. My onc gradually reduced the dosage once I started developing cracks in my hands.

[Debbigbang in reply to life8888]

Ohhh not sure what this new dose will be, I was off for a month 1800 was way too much and brought some complications. We will go with a lower does, but I do the 21 days and 1 week off.

Deb

[life8888 in reply to Debbigbang]

Yea every onc has their favorite dosing. Interesting how different it is.

[Debbigbang in reply to life8888]

Yes indeed, it really is. The name of the game is to shrink and heal these leisions..whatever works!!

Deb

[Ntash01 in reply to life8888]

Oh life8888…. I am LOLing with you… that’s part of my denial mechanism until I have to tell someone!Great advice - I shall write them all down and implement to see what works for me.

Thank you

Tc

[Kruza]

I am sending you good thoughts and prayers.

[Ntash01 in reply to Kruza]

Thank you Kruza, much appreciated. Tc x

[Ntash01]

Thank you all for responding- greatly appreciated

Day 2 - so far so good… swallowing 6 pills per day went better than I expected. I’m assuming that I won’t notice anything until the end of cycle 1 but praying I notice nothing other than a decrease in that lump!

Tc

N x

[Rbeth]

I used Udder Cream on my hands and feet. The medication comes out the hands and feet. My hands and feet peeled once, then healed. I am now on Piqray and a side effect is type2 diabetes. I am working with a specialist endocrinologist at MSK on controlling the diabetes. Do not take insulin as it helps cancer grow. Best in everyone’s treatment. Reenie

[Ntash01]

Thank you. I shall but the cream and use, hopefully avoid issues or at least minimise.Tc