Hi ladies, good to hear that some of you have coped ok on Cape. I'm just coming to the end of my third cycle and to be honest have struggled though this last cycle. I haven't been struck with anything really grim like sickness or diarrhoea but have been really tired and feel generally yucky (sickish, horrible chemical taste in mouth and generally a bit bleurgh) Also, the dreaded chemo brain has returned , either that or i'm losing my marbles Anyhoo, i'm due to finish this cycle on Wednesday morning but have taken the decision not to take any more Cape this cycle (missing five doses) and will speak to the nurse next week when I see her. Hopefully they can reduce the dose a bit. Apparently, one of my liver enzymes has been raised a bit but my cancer marker has been coming down. I'm due to see the Oncologist on 5th November and I presume that he'll refer me for a CT scan to see what's happening. I'm usually quite hardy drugs wise but am finding this one a bit tricky, don't want to use up all my options too soon though.....
Hope you are all keeping well
Hi Cape Ladies! Cape worked for me for 2 1/2 years. I would say the last 3 months of it was trying to stretch it out a bit longer. I didn't have much of a problem other than the soles of my feet discolored. They kind of turned a red/Brown and were sore once in awhile.
My evil drug was gemcitibine! It is the drug that lowered my white counts and I had to have an injection of neulasta every month. I did gem for 10 months. Then one day we were out of town and I was gasping for air. We thought it was the sudden end of me. It was a toxic reaction to gem. Had to come stop it and went on O2 for about a month. They gave me about a 2 week break from treatments then started palbociclib. I had a friend who took one dose of gemcitibine felt lousy, went to our local hospital. He was then air lifted into Philadelphia with internal bleeding that the local hospital couldn't get stopped. Always go get checked if you feel really lousy! You never know what SE you could be having.
Good luck ladies!
Hi Cape Crusaders!
Apologies Jo for not replying to you before but I hadn’t seen your questions or your post in fact, sorry.
I was on Cape in 2013 and it worked well for me for about 18 months, I may already have told you that it was so long ago I’d posted! Before that I had FEC chemo, in 2008, when my bone mets were diagnosed as well as a local recurrence of my primary. As I didn’t have (need) chemo with my primary it was decided to have chemo then although not everyone has chemo with an initial diagnosis of bone mets. After those 6 cycles of chemo I went onto Anastrozole which kept me stable for nearly 5 years. At that point liver mets were diagnosed and I had Capecitabine. Since then I’ve had more chemo which most of it has been IV so, yes, it has been the ‘big guns’. However I have had periods of stability on hormone treatments, most recently last year on Fulvestrant. I’m now back on Eribulin, again IV, but one that it faulty tolerable. The worst chemo, for mean terms of side effects, was FEC the others have not been as bad but they all come with their own special ‘treats’ ha ha.
Hope Cape works for you and all the other ladies currently on it for a long time.
Yes I was on Capecitabine 2 years ago when I was diagnosed with liver mets. I found it tolerable with very few side effects It worked for me for about 10 months but alot of people seem to get longer.
Think I remember you when you were on pacitaxil.
Good luck with your next scan in November.
Just wondering how you are getting on with capecitabine. I started it in June and it seems tolerable so far. This is my 10th treatment in nearly 7 years of bone & liver mets besides taking Denosumab and Zoladex alongside. My last scan in Aug showed improvement in the liver so hoping it's still working when I am scanned in Nov as I haven't many options left.
Hope you're doing well and anyone else on cape, the thread has gone a bit quiet recently.
thanks for your reply. I picked up the tablets yesterday <eek> but the nurse said I didn't have to start taking them until Monday as i've got a weekend up in London planned and was worried in case any side effects kicked in quickly. She said that she didn't think a few more days would hurt :-) As i'm a bit lardy, I seem to have to take a lots of tablets daily, more than I was expecting (four large and two small twice a day) but i'll have to see how I get on. I did ask her about breakfast and and the possibility of a couple of biscuits but she said at least a couple of slices of toast would be ideal. It's good to know that it doesn't need to be a strict 12 hour split as well as that would be quite limiting. She did also say that some of her patients had been doing very well on it for several years so fingers crossed! She also said that they would adjust the dose if the side effects were too much and if in doubt stop taking it and contact them.
I know you've probably said already somewhere before but what treatment/s dis you have after Cape? Does it all start
to get a bit hardcore after that?
Hope you're keeping well?
I was on Capecitabine back in 2013 when my liver mets were first diagnosed. To be honest I found the first few cycles quite difficult and struggled a bit with side effects. However I did have a dose reduction of 20% very early on, to help me cope, and also my body seemed to adjust to this chemo and I coped overall very well for the 18 months I was then on it for. I did have a few breaks in the treatment to allow my hands to recover, I got a few splits in them at times, but overall I tolerated it well. I think most ladies do. As to work etc I did have to stop work but that was only because I was going into hospital environments and I was worried about my lowered immunity. Other ladies do carry on with work so it would depend how you feel and what you do. Fatigue can hit us all at times but I did feel quite OK on this chemo, as opposed to others I’ve had, so again, it will depend on how you tolerate Capecitabine. Basically though don’t suffer in silence, my oncologist told me they want to get the dose right so we do tolerate it for a long time,there’s no point trying to keep at a high dose and feel miserable. I stayed on a 80% dose for the rest of my time on it and it was effective for all that time.
You asked about eating and you do need to have something before or with the tablets. I think you’d feel pretty rotten if you didn’t, and I think there’s a reason as well for not having them on an empty stomach. Maybe have a biscuit or two with a cup of tea in the morning, or a yogurt or something if you don’t usually have breakfast? Also you don’t need to be a strict 12 hours between doses, just make sure they are at least 8 hours apart, that way you don’t have to change all your eating habits!
I was on Palbociclib/Exemestane for about eighteen months and everything was stable but then randomly have a new 2cm lesion in my liver (even though the existing ones were still stable) so Palbo stopped.
I'm due to start Cape on 14th August as i've got a bit of holiday first, just Devon but it will be nice to get away after a not very nice year or two. I'm really nervous to be honest. I've always tolerated the drugs quite well but it's daunting facing a new challenge.
Can I just ask? I know that you have to eat with Cape but I don't usually have breakfast, how much no you need to eat? also, is there anyone else that still works? I currently work about 24 hours a week and have struggled with fatigue but just try to rest when I can. I'm beginning to wonder if it might be time to retire though that could cause financial stress (I'm 52)
thanks in advance for any help
I have been taking capecitabine for 6 months, now every month 2 days after I stop I get a uti. Anyone else?
wondering if you can tell me how long you where on Palbociclib and Letrozole.
I only had it for two cycles onocoligist said it is not working.scans show that pablo and Letrozole working for some of the liver mets.
Dont understand how they can tell after only two cycles.
Mets in bones and many in liver.
Alt in liver went up,he says that is why treatment is not working.
Thank you, it was great to hear your positive response and how well its served you. Maybe I'll be lucky too! Interesting reading about the feet thing, not mentioned on the leaflet I've been given.
Bon.........all my best wishes for you and thinking of you each day. Perhaps there will yet be a treatment you could consider, but in the end you must decide. We are all in the same boat remember, and going on the same journey. You are not alone. We hold hands. We all hope to give support by doing that. You have given so much support to others over the years. Do come back here to let us know how you are, if you feel like it. But always thinking of you, as you move forward.
With love, mo
Bon,I'm sorry to hear of your latest results,take good care of yourself and indulge in anything you like.
Hugs to you
Big hugs to you Bon, my heart goes out to you and your family. Holding your hand on your continued journey and please keep in touch either by PM or on here generally as long as you feel you want to. Take care and look after yourself, I hope there might be some treatment for you to consider if you want to.
My scan showed mets in brain and lung in addition to those in bones and liver so am stopping treatment but I'm 72 so haven't done badly.
Hugs to all
Hello, I started my second cycle. I am a little bit reluctant to write it but I do not have any major or persistent side effects yet. My lovely onco says to continue with cream for hands and feet though as this tends to build up. I hope it will not get much worse. For me the most challenging was to get used to the routine - I have 4 alarms: 2 for food before and 2 for medication every 12 hours, and also the amount of tablets to be swallowed! One positive, I feel a little bit less tired than I used to on letrozole/palbo. Most important, I hope it works.
Bon, I hope you feel better soon, and will be able to continue your treatment. Wishing you all ladies good results and minimal side effects.
Hi Bon, are you just having a break or have you stopped cape now.hope your scan results are good news.
i'm still chugging along, taking more pain meds now.
hugs to you
Hi all cape crusaders, hope you are doing all right.
I have been off it now for about 3 weeks though I did not think my side effects were too bad. I have developed a problem with my right eye and had a scan yesterday. Have started to feel more unwell so starting steroids tomorrow.
Hugs to all
Seems like we all have similar problems on the capecitabine.
After my first 3 months on it my MRI showed amazing improvement in my bone mets - I had been ready to tell my oncologist i’d had enough of the side effects but decided I had to carry on.
I take loperamide constantly when i’m on treatment as diarrhoea and tummy upsets are my main problem. I’m now on ondansetron for nausea and I take gaviscon to help protect my tummy. My bone pain has decreased too so i’m now on paracetamol rather than co codamol for pain relief.
I did have multiple pulmonary embolisms in September so am also on daily anticoagulants.
Good luck to everyone and long may our good scans continue 😊😊😊
Tonight I took my first cape dose. Unfortunately, Palbo + letrozole didn't work for long for me. I can only keep faith.
I have only been on cape for 6 weeks and am having a break and a scan to see if it's working.
I have no experience of post op pain but I have had severe fatigue, sickness, dry mouth and constipation. I usually feel a bit better after a couple of days of my days off but it doesn't always last and the symptoms are still there, just not so bad. I've muscle weakness (finding it hard to cuddle my bouncing 6 month old grandson) and peripheral neuropathy in my feet which I had a bit before I started cape.
This is my experience but everyone is different. I just looked up Velindre and they seem like they might be the right place to give you some answers.
Have you tried contacting the breast care nurses on this website. They should be able to give you some advice.
You feel so isolated and the hospital doesn't always help much. Some hospitals like mine have a secondary breast care nurse but many don't.
Hugs to both of you
Hi Alex, I had to go off cape for 5 and a half weeks and the cancer grew during the 5th week so as soon she she gets back on it the better I would say. This does not happen to most people I think because some are off it for longer periods with no worsening of symptoms, The best advice I can give for cape is use cream on your hands and feet night and day BEFORE any problems start, ALSO HAVE IMMODIUM READY in case you get the runs, take 2 immediately after 1st movement and then I after every loose bowel movement. This is a medicine which builds I am told.
Hi my mum is on Cape 2 weeks on and a week off they have not been able to give it to her for the last 5 weeks as she has been unwell. She has been having constant pain in the scar area from her open gallbladder removal in August does anyone know if Cape can be causing this pain? Could the pain be neuropathy from taking Cape? Is it normal to have side effects whilst on a break after not taking it for 5 weeks? She only has 2 more weeks on and then she has finished her 6 sessions of 2 weeks on. She has only been having bad side effects as in fatigue sickness dry mouth indigestion and constipation from it since they stopped it 5 weeks ago is this normal as she had hardly any side effects until 5 weeks ago when they stopped it? Has anyone else had pain where they had an operation after taking Cape? She is now in slow release morphine for this supposed scar tissue pain and fast acting morphine that i feel knocks her out and if shes awake shes not completely with it. Does Cape cause muscle weakness in legs? Dizziness? Any answers would be a great help as I dont know what to expect and I am her only full time carer and it's scary not knowing what to expect and how to deal with it. Thank you in advance. We have an appointment Monday with velindre I have a list of questions I will ask them also.
Happy Easter to everyone visiting the threads today! The weather here in bucks is hot and sunny, more like July! Enjoy your day!
Hi Bon,that's a high dose so it's great that you are coping. How do they know it's working for you if they don't do a scan? My scans are 3 monthly. They don't do tumour markers though, maybe that's the difference.
I'm on 2300 twice a day and the only serious side effect I've had is fatigue which can be hard to cope with and leaves you feeling isolated. I'm on my 5th cycle and really want a scan to see how things are doing. Onc not keen, says he doesn't think I need one
Pina,snap! Now on 1500 twice a day after being hospitalised for awful side effects, Fine on this dose so far,just hope it's working.The only difference to you is i'm not having the sick feeling. Fatigue is the worst, have to pace myself.
Hi. I'm new to this forum. Haven't had chance to plough through all the messages yet but will!!
i've been on Capecitabine since last April and it's been a bit of a rollercoaster ride with side effects. Tried various combinations of meds and found the best for me are loperamide, ondansetrin and gaviscon. Had a really awful time when I first started but have cut the dose now to 2 x 1500 daily and am coping though do have some days each month when I feel awful!!
Look forward to finding out how you are all doing. X
Bon and Ramade, Nice to see you posting! Ramade fingers crossed its working. Bob, Hope you feel better after bloods. FF
thanks for your input Mo. It made interesting reading. I am still taking ranitidine and gaviscon, my reflux isn’t too bad. It is interesting how opinions differ, when I saw my GP about four or five weeks ago he also said to continue with all of my meds. It was after that when I read up about the SEs and mentioned it to the Onc and he said to drop the Lansoprozole -‘for a few weeks’ - to see how it goes.
As you say it is a matter of balance
love to all,
First of all I’m hoping that you drop by here sometimes, Carolyn. Sending you love and hugs and always thinking of you............hopefully snug and cosy at home on a reclining chair with a favourite cuppa!
lynne........I read about your lansoprazole. I was taking omeprazole for about two years......... before my secondary dx.........but decided to stop for two reasons. I heard by chance a consultant gastroentologist on the radio who said that it was by then recognised that taking these ppis, like omeprazole and lansoprazole, long term was not as benign as previously thought. My gp had said they could be taken forever! Also I had to admit that omeprazole didn’t help my reflux........main se coughing for me........as much as diet. These two things meant I decided to come off it. I have lost weight recently so must eat plenty of fat so I’m tolerating all the coughing. I have been recommended omeprazole by gp, but not bothering. Perhaps after 8 years you needed a break. All I am saying is that you are right to try coming off lansoprazole, while remembering that it is all a balance. We have to just balance up risks with what works for us. As usual we have to see how it goes!
i am starting my second cycle of cape on Saturday. I have had the big d in my time off. No problems while on the cape! Last night I took 2 loperamide before bed to anticipate the d in the early hours.......advice of my palliative nurse........lovely lady! It worked. I slept through until 7.30 and normal bowels after breakfast. So much better than taking lop after the d at 4am! Again, we have to try out what might work. Otherwise my ses have been nosebleeds, one mouth ulcer ( I use iglu.....the best for me) , tiredness at unexpected moments, no hand and foot........yet.
take care everyone. I have learnt such a lot from this cape thread to help me, so many thanks to you all!
Hi everyone hope you are all as well as you can be.
I am about halfway through my eighth cycle now, looking forward to my week off next week
I missed my last cycle because I had awful pain in my upper abdomen and back so they decided to miss a cycle to see if it could be the Cape causing it. They also ordered a scan which came back stable—yay!!! I then got a bit proactive because the Cape seems to be doing okay for me and I don’t want it to stop. I read through the side effects of the other meds that I am taking, mainly for reflux and I discovered that long term use of Lanzaprozole can cause these problems- I have been taking it for years, at least eight... long before being diagnosed
I showed it to the Onc and we decided to stop it and restart the Cape. Well all of the pains have disappeared- though I still suffer reflux- taking Gaviscon regularly.
This cycle I am a bit more tired and constipation/diarrhoea but I think that I am getting used to the Cape again after my break.
I am taking 2000mg twice a day so 4000mg, seems a lot but my SE’s are manageable - they do say that there could be room for a reduction in dose if necessary
fingers crossed and lots of hugs to everyone
Hi Ramade, glad you are doing better. 3000mg sounds like a lot. I'm on my fifth cycle. Fingers crossed for us all.
hi Bon, glad you are doing ok,So far with the lower dose of 3000mg a day i'm managing better, Just hope it's working,
How many cycles have you done so far?
Hi all Cape crusaders, how are you doing?
I'm not too bad apart from tiredness and neuropathy. Had a blood transfusion on Friday so hoping for more energy.
Hugs to all
How lovely to hear from you and that you’ve managed to escape. Let alone escaping you’ve managed to snag yourself a spot in your own garden, how wonderful. Hoping that you are keeping well and can enjoy the current spell of good weather. Thinking of you.
Carolyn, That sounds lovely to be able to relax in a garden. Good medicine for the soul! FF
Hi Jayne,i do have a sore left ear, inside but i assumed it was the brain and skull mets on that side so i was interested to read your comment. Certainlt i didn't have it before the Cape.
Remade, thanks for your advice to help with my blackouts. Certainly I have increased my water intake........plus cups of tea!......and keep water by my bed to slurp through the night and before getting up. I drink cups of water through the day too. Things have improved so it’s working. I also agree with eating well. I snack more than before to keep up intake. Being ‘unwell’ is new for most of us and adapting to thinking about how we live takes time. Thanks again for your advice.
hugs to Carolyn as usual! I hope everyone can enjoy some spring weather this week!
super to hear from you carolyn! Enjoy the garden. Wish i lived in Devon! I'm sure you have some sea air drifting over too. Love and hugs,
Carolyn, so glad you are relaxing in the garden, so better than you were thank goodness.
Carolyn how wonderful to hear from you. Hope the recovery continues well and the sun keeps shining on the garden.
Love or amoromorph still in recovery ..very nice and luxury
.... relaxing sitting in gardenigs here xxxxxx