Forum Discussion
New member - Question re oral chemotherapy capecitabine
Original post created by member @Brondocs - moved to Metastatic breast cancer discussions
Hello, I am a new member and appreciate so much hearing everyone’s stories.
In May 2018, I was at work and as I brushed some fluff off my shirt I felt a golf ball sized lump on my chest. This turned out to be triple negative breast cancer and the lump had literally popped up overnight. I know this because I am small breasted and would have noticed if it had been there before. Within two weeks I was in surgery for a lumpectomy which was the easiest part of the whole process. The cancer had not spread to my lymph glands so I felt lucky.
I then started 6 months of chemo. For the first four months of the heavy going chemo I was sicker than I ever imagined from the side effects. I ended up staying in hospital each time.
But after that, when I went to once a week lighter chemo, I was managing pretty well. I was also part of an exercise physio research program which really helped me feel as If I had one thing to help me through. Then I had a month of radiotherapy – which was fine.
THEN I had two years of great health until February this year when I developed a recurrent cough. I thought it was some sort of asthma, so I went to my GP who send me for a chest Xray.
I was completely shocked to find out I had metastatic cancer all through my lungs, in my brain and in my neck.
I had a week’s radiotherapy on my brain which had horrible side effects ( nausea, headaches, hair loss) combined with starting the heavy going chemo for the next 6 months. Again, I had terrible side effects – mainly trouble breathing, dizziness, exhaustion and clotting in my arms for the first four months, so spend more time back in hospital.
My oncologist has moved me now onto an oral chemotherapy- capecitabine. I was wondering if anyone else was taking this and if the exhaustion from the 6 months of strong chemo infusions will dissipate or persist ? I haven’t had any additional side effects so far. My insomnia is also persisting and quite a few of the other side effects from the infusions.
Any advice or info much appreciated !
Hello, I am a new member and appreciate so much hearing everyone’s stories.
In May 2018, I was at work and as I brushed some fluff off my shirt I felt a golf ball sized lump on my chest. This turned out to be triple negative breast cancer and the lump had literally popped up overnight. I know this because I am small breasted and would have noticed if it had been there before. Within two weeks I was in surgery for a lumpectomy which was the easiest part of the whole process. The cancer had not spread to my lymph glands so I felt lucky.
I then started 6 months of chemo. For the first four months of the heavy going chemo I was sicker than I ever imagined from the side effects. I ended up staying in hospital each time.
But after that, when I went to once a week lighter chemo, I was managing pretty well. I was also part of an exercise physio research program which really helped me feel as If I had one thing to help me through. Then I had a month of radiotherapy – which was fine.
THEN I had two years of great health until February this year when I developed a recurrent cough. I thought it was some sort of asthma, so I went to my GP who send me for a chest Xray.
I was completely shocked to find out I had metastatic cancer all through my lungs, in my brain and in my neck.
I had a week’s radiotherapy on my brain which had horrible side effects ( nausea, headaches, hair loss) combined with starting the heavy going chemo for the next 6 months. Again, I had terrible side effects – mainly trouble breathing, dizziness, exhaustion and clotting in my arms for the first four months, so spend more time back in hospital.
My oncologist has moved me now onto an oral chemotherapy- capecitabine. I was wondering if anyone else was taking this and if the exhaustion from the 6 months of strong chemo infusions will dissipate or persist ? I haven’t had any additional side effects so far. My insomnia is also persisting and quite a few of the other side effects from the infusions.
Any advice or info much appreciated !
32 Replies
- Hi @wendy55,
It's quite awhile since we spoke as I couldn't get into this site and became frustrated, so just disappeared into daily life.
I was stable on kisqali and femara with not many side effects. My avatar was smiley van winkle but since then have rejoined BCNA a few weeks ago with a new profile. Kisqali and femara stopped working for me and I was put on Afinitor and Exemestine 5 months ago, dose had to be reduced because of bad mouth ulcers and recently I became unwell after a long caravan trip up north and upon having ct and bloods on returning it was found this treatment had stopped working and now have lung mets.
I was interested to see you were on Capecitabine which I have just started my first cycle today, hope I get a good run on this one.
Must get some cotton gloves and sox as you recommend just to be prepared.
Hope you are going well and still enjoying your caravan trips.
Cheers, Janis 🙂 - Hi @Ellamary98,
I too was on capecitibine for 34 months, I used to buy my white cotton gloves from the supermarket, they were about $2 a pair and I had about 8 pairs,so I always had a clean pair handy,I had to wear them to drive and for everyday use,they made life so much easier,my feet too were very sore and peeled,again it was just cotton socks, especially those that had those little black dots on them to grip the floor,and thank goodness I had a dishwasher!!!.
I found that I could not peel vegetables or do any fiddly type things,I am very lucky that I have a very supportive partner.
wendy55 - Oooh - the jogging probably wouldn't have helped .... but is good for your mental health too.
Chemists usually have the cotton gloves in a couple of sizes (some people put them inside their rubber gloves when doing the washing up, as that moisture buildup between the fingers can cause pugginess too.)
take care & all the best - Thanks @arpie. I suspect that I set off my blistered soles by lightly jogging on Sunday, so I'm hoping that once these blisters heal, it will be more manageable, but I definitely need to go back to my podiatrist. It it certainly painful today. Hands are also just beginning to feel sore in spots between fingers. No nausea thus far this 2nd round, and I am nearly done, so looking forward to the break. Where did you get the cotton gloves?
- I am sorry to hear that @Ellamary98 - make sure you check between the toes as well - sort of like tinea - if it cracks thru to the flesh, it could bleed & can be very painful. Hopefully that doesn't happen.
I definitely recommend a good podiatrist if you can, now & then as they really tidy up the whole foot & toenails with specialised tools (hubby's toenails have caked up too.) ... We see a really good one about every 2 months for hubby & his feet. The urea cream is very much recommended as well - some are stronger than the '15' too ... 20, 30 & 40% ... ask the podiatrist about it.
Our podiatrist also recommends NS21 cream for general heel & sole care .... Keep your hands moisturised as well to hopefully prevent them peeling too xx - yesterday my feet became sore and blistered on the soles. I wasn’t expecting it to develop so quickly (this is my second round of Capecitabine). My hands seem ok thus far. Thanks for your tips @Shakespeare .
- Hi @Brondocs Capecitabine worked well for me for 15 months but I did get full on skin/hand/and mostly feet issues. A skin specialist recommended some Cortisone for the rash on my arms which settled down. And I was wearing cotton gloves at night with my hands slathered in Moogoo. But the feet became the ongoing challenge and I saw a podiatrist who scraped off the flaky skin and i elevated my feet on a pillow, used a bed cradle and wore loose cotton sockettes at night with intensive Urea 15 foot lotion and when necessary cold packs. I also bought comfy Sketcher shoes, slightly larger than usual so I could wear thick socks. So then it was manageable......and I was happy to have something that worked for that long without having to have chemo IV.. So good luck! (:
- @arpie thankyou will look into getting some of this, have noticed that on the week off it’s not too bad
- I’m also just on the Capecitabine. A little dry mouth after my first round, but just rinsing with the Moo Goo mouthwash thus far. The gel is a good idea.
- Thanks @Glynnis ... hubby had the dry mouth (easy to actually 'hear' it in his voice, too, weirdly!) Not the diarrhoea tho! It was the Folfiri (current chemo) that gave him diarrhoea and hair loss - the hair loss really pisses him off as he had a lovely head of hair.
Our dentist gave him this to try - it comes in various fruit flavours and is quite good. You can also get some sort of 'sponge on sticks' that you wipe the inside of your mouth with (I forget the name tho. Sorry!)
