Hey everyone- I hope my message finds you as well as possible
I’ve not been on much, but thought I should give an update on my personal journey whilst on this medication. I personally know how important it is to hear of others experiences - the good and bad.
After 3 cycles, my MRI showed a good response. My onc said spots had reduced, nothing new and nothing had increased. She said that was particularly good given it had only been 3 cycles. I had to have a 3 week break because of issues with my feet - blisters & discolouration mainly. I feel well within myself, I’m still carrying on with my days as ‘normal’, my foot issue have mainly healed, but my big toe is still ‘not right’, I think that may be a GP question - discoloured and sore looking, but it doesn’t stop me from walking. Hands are fine, easier to care for.
I’m happy with this medication and do hope it works for at least a year…. More would be fantastic! 3rd line of treatment since 2020 .
If anyone is or has been on Cape, how long did it work for you?
Tc from chilly UK!
Nx
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Ntash01
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It was also my 3rd treatment since 2020. I got almost a year out of it before having to move on. Hoping and praying that you'll get longer than me. I've moved on to IV Enhertu every 3 weeks.
I read somewhere that ladies fear IV chemo (me 🙋♀️) but what’s the difference from having the poison orally… interesting perspective that actually left me thinking and helped me to do some forward planning and be less fearful.
Hi Ntash01, I also had a big toe problem while on xeloda. It was an infected ingrown toe nail, first in my life. I went to a podiatrist to get it out and he prescribed muciprocin 2%, which according to the insert kills a type of Pseudomonas bacteria. It healed up. I've read that chemo kills many bacteria in the body's biome but not pseudomonas or staph. Be careful of receding gums too because it can be related to overexpressed bacteria populations. I found that drinking kefir and/or taking a probiotic can help with both, at least for me but everyone's different. I think having a gp or podiatrist look at your big toe would be the way to go. Maybe your onc can prescribe something like muciprocin as well.Good luck!
Thank you for your advice Life8888, so helpful. I looked at toe and it looks like the nail is slightly coming away on one side. I did a hardcore house clean yesterday and it started to bleed! I soaked my toe in salty water to try and clean it up, salty water is like disinfectant (I’m sure I read this). It’s better now - no bleed but still yuk! I’ll add the keffir & pro biotics to my diet, hopefully it helps. As for mouth, I’m trying hard to pay a lot of attention to that.
The podiatrist I went to soaked my feet in an Epsom salt bath first thing. I bought some to soak my feet and hands, and it actually helped with the hand and foot syndrome. But the first salt bath HURT hahaha.
I was encouraged by your comment. I too am on Capecitabine in my 3rd cycle. The main side effect is some fatigue. My oncologist told me to use lotion with 10% urea for my hands and feet and it has worked well to keep the hand/foot syndrome away so far. This is my 4th line of treatment since January 2016. My first chemo treatment. I am due to have a PET/CT scan in November to see if the treatment is working
I hope the very best results as we continue this treatment. Thank you for sharing.
I’m slightly (actually very) stubborn and tend to plough through the fatigue, I don’t know how I get through my busy days - but when I get home I just do nothing! My family get upset with me, but I just figured that I’m going to do what I want when I want whilst I can!
I started on Ibrance, then moved onto Faslodex- I’ve read that many do both as a combo but I did not.
hello… thanks for posting. I am starting this treatment on Monday. I had a good run with Ibrance/ faslodax but my body started to become so toxic that we had to stop two weeks ago. I am hopeful this new treatment will be effective. I was breast cancer ER positive 2008, Surgery and radiation, clear for 10 years and then metastatic to my lungs in August 2019 with malignant pleural effusions. Pretty stable but complications from the drug treatment. Ever hopeful. ( age 65). This site has been so helpful to me. Thank you.
You say that your body had become so toxic. Please elaborate. Many of us are on Faslodex and would like to know more. Do you think. it could be the Ibrance that created the toxicity rather than Faslodex or the combination of both?
my oncologist said it was the Ibrance, extremely low neutrafils, extremely low white blood cells, low platelets, red blood cells anemic, extreme fatigue, mouth sores. Was grateful for the time on it but change is good.
I wanted to remain on Ibrance so badly, but in actual fact my body did better on Faslodex. I loved the fact that I didn’t have to remember to take pills, even though I disliked the jabs - they were manageable.
as above, toxic was very low platelets, low red blood cells, severe low neutrafils, severe low white blood cells, extreme fatigue, mouth sores . My oncologist said it was the Ibrance .
Thank you for the up-date. It’s always good to hear how others are doing on the same meds.
I’ve had six and a half cycles of Capecitabine since 4 May. (I’ve had to have a couple of breaks for a mastectomy and to start radiotherapy shortly.) I’ve had a good response with no side effects, except a bit of fatigue. I have just looked up how many cycles I’ve had and was surprised I’d had so many as I feel I’m just new to it. I’ve had a lot going on in that time though!
I was told the average time is about nine months on this drug but I’m really hoping for much longer too.
Yes!! I was diagnosed occult de novo (no lump found and already stage 4) nearly four years ago. So my cancer journey began with Letrozole and Ibrance from the get go.
Fast forward to June when I developed a new primary breast cancer. This time an aggressive, grade three, triple negative diagnosis. So it is being treated separately to my metastatic disease. It is unusual so I’m waiting for the results of the BRCA gene test. It will determine if I have access to other drugs. Although the Capecitabine was beginning to work well on my metastatic disease the new BC appeared while I was on my first cycle. It grew to 10.5 cm before surgery. I am waiting to begin radiotherapy now and I’m back to being a frequent flyer kinda patient!!
Hi Stardust1965, I wanted to ask how they found the lump whether it was via mamo or CT scan. The reason I ask is that I was told by my onc that as I am mbc I no longer require mamos as he said if I'm on the meds a new lump shouldn't develop...but in your case you were on the meds and a tumor developed in the breast am I correct?...discovered by mamo or CT scan?
Yes, that’s correct, I was on treatment for my MBC and the new lump spontaneously grew. I discovered it myself as it was so large and seemed to appear almost overnight and was about 5cm at that point but grew to 10.5cm by the time I had my surgery. It showed up on the mammogram and PET scan that I had on the day I had the biopsy. I have scans every three months and it didn’t appear on the previous one. But it was so aggressive I don’t think it was there then. I’ve since learnt that triple negative BC often presents like this. You probably don’t need mammograms if you are having regular scans. I know some women here do continue with their regular mammogram checks but I don’t think it would have made any difference in my case. It is unusual to have a new and different primary grow while on treatment. I will continue on the previous treatment of capecitabine once my radiotherapy has finished as that is the normal treatment for TNBC but it’s very much a watch and wait scenario.
Thank you for your reply! Sorry to hear you have been through so much. Thankfully you found the lump yourself! Wishing you all the best in your next treatments 💞
Hi! Just ending my 7th cycle today. I too, have my skin peeling on the bottoms of my feet and terrible discoloration (especially if I’m on my feet a lot). My hands are fine. My podiatrist gave me a script for Urea 40% lotion and that seems to make my feet a bit better. The fatigue is horrible though. But I look at as a trade off because the Capecitabine is working. Markers went from 1858 to 287. Still a ways to go but I’m getting there! Good luck to you and everyone else!
Unfortunately my experience wasn't great. First there was just a faint nausea all the time--tolerable. But my hands and feet suddenly felt not just uncomfortable, but burning--hurt to walk on and swelled up--red. I had been tapdancing the night before, and the day the real pain started had walked all over Amsterdam. To much foot usage? But I use my feet a lot. So now I'm on Avastin and Paclitaxel (was also on the biosimilar for Avastin before) and feel nauseous and weak and am losing hair. I sure hope this stuff works. Think the next try would be Enhertu, which I hear (via a Facebook group dedicated to this new med) is either a miracle or a dud. Depending on the woman. Yikes. Hope I'm among the chosen for whom it works.
I’m so sorry Mel to hear of your experience and thank you for sharing. My feet started after I did hardcore walking when I went on holiday too! Since then, I’ve just about got it back on track - but I’d do it all again - we need our hols I’ll worry about feet after!
I shall send you the most positive vibes and pray your defo ARE one of the chosen ones x
I, too had trouble with my big toenail while on capacitance . After a while, it came lose from the toe and fell off. It's been almost a year. It has not fully grown back but what is there is very thick. No bother.
Except for the hand and foot syndrome, I was happy with the capecitabine and it was working. Now a few drugs later, doc needs to find something new for me.
Hey Photo-Bug, I’m thinking mine looks like it wants to fall off too…. But I’m not letting it go easily😆! I’m not fused if it does, as long as I’m not in pain.. and your experience is encouraging. To be honest, it’s the colour of my toe that worries me the most - looks like the whole thing is going to fall off!
You say after Cape you had a few other drugs, if you don’t mind - can you tell me what they were?
Piqray-did work a little bit but the side effects were unbearable , Taxol 12 weekly cycles-didn't work at all, and now exemestane-not working after 90 days. Off to see the oncologist in just a few minutes. 🤞
I saw the doc yesterday. In 2 months I get another scan. If things still look good, I may go back on capacitance. I have been off for over a year. We'll see.
Glad to hear that after only 3 cycles. I am on my week break after 7. After 6, finally my 2 scans showed no progession and doc says i am stable so I will take it. I find it odd that it took so long to show response. I tm's have increased on this drug too, but the CT and Gamma scans both stated stable. I too have had problems with my big toe and heels, are tender. Hands no problem and no other issues except for being tired of being tired. Let's hope this works for us! Blesssings to all.
Even though it took some time, at least your onc let you persevere with it, I’m assuming there wasn’t any progression or anything new? Better late that’s for sure!
Yes, after the scans and the docs stated stable, my doc said we are not going to switch drugs. I said I totally agree. Let's milk it as long as possible. Even though it took so long for it to show no pregression. So, on the next 2 cycles and then see doc with tm's on the 14th of Nov. Again, we all need to remember that these drugs either work or they don't and we are all different and our bodies all react differently too. Just glad to be stable;-))
I got a full year from it and did pretty well until the last month when it gave me horrible gastrointestinal problems. I am now on IV Taxol which I resisted but it has been working pretty well. Glad you are doing well with it.
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NCI update and pain in fingers
Markers have jumped from 86 to 156 in 1 month 
