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
Hi mo. Thanks for your input
i had my scan today and am now awaiting results. My GP advised me to take Oromorph regularly ie. 4 times a day for 3 days and anti-sickness 3 times a day as well.
The pain is much better and the nausea but I hope they don’t reappear when I stop the meds. Of course we all know how hard it can be waiting for results.
Hope everyone is as well as they can be. FF hope u are feeling better and that your energy returns.
also Carolyn, hope things are staying stable with you
take care all
Lynn........first of all, what do I know? As I said below I’m a beginner on cape. On the other hand I also know that we are also subject to other medical issues and chemo can mask that, in the sense that we may focus everything on the chemo. In this case cape. All I’m saying is that your hub could well be right about your symptoms being unrelated to the cancer. It has come on quite quickly, and after 6 cycles one would think your body had made adjustments to avoid sudden reactions. All I’m saying is that as usual we have to be patient and not despair! I’m hoping your scan results will come today.......Thursday?.........and you will move forward quickly. Your onc will sort this. Lower TMS must be good. You may need a break if there is new treatment for whatever this is.
I have a kidney stent because of lymph nodes near my kidney, discovered by chance, and will have an extra week break for it to be replaced on the 2nd. After only one cycle! I am sat in bed here trying to avoid passing out again! Must go and have a banana and my pills! Should I admit that I have chickened out on the big 500mg pills........too big for me who has never taken pills........and take 10 teeny 150s with my yoghurt! Please nobody laugh! At least they are easy. We must all do whatever it takes! I would only admit this pill weakness here! A sympathetic community.
all the best, lynn, and try to keep us updated. Same for ff and your hb and possible transfusion. I think of you as a real pro, ff! You are so well informed and pro active. Let us know of any developments with you. And of course dear Carolyn if you are dropping by. Hugs and love as usual. Love to all. Sorry for rambling,
Hello Mo, just read your post. i had blood pressure very low so had to be very slow at getting up from a chair etc or i keeled over, Also heart rate really beating fast. Make sure you drink loads to raise your blood pressure. i am on 4th cycle now with lowered dose to same as you now and so far so good. i was off it for six weeks because of not being able to stand-jelly legs, dehydration, inflamed gut. in hospital for 8 days,horrendous. i am drinking loads more now and eating more and it seems to really help.
My haemoglobin was 82, it had been going down for some time. It's difficult to know whether synptoms are low blood count or side effects.
Hello everyone, in particular Carolyn. Hope you are doing fine and resting up. We are all thinking of you and sending lots of hugs!
For once I’m going to ask a question and advice. I have just started my cape.........last Saturday......taking 1500mg x 2. Felt nothing for 3 days, but yesterday and today I have nearly fainted on getting up in the morning........everything black, dizzy, etc........and eyes sore. Feeling generally weird and odd. I was prepared for hands and feet, and big D ( which may be developing), but blacking out wasn’t on my list of ses. Saw gp as follow up for uti check related to a urethral stent, and she checked bp. High for me and fast pulse, but she just merrily said carry on. She thinks my body will adjust. There are people on this thread with experience so just thought I’d ask. Otherwise I sit around feeling sorry for myself! I’m a newbie to cape as you can see. I had docetaxel a year ago and didn’t feel like this, but chemos, and we, are all different.
anyway, enough about me. Hope everyone is managing. Wish spring would arrive properly........we need sunshine! Although we are supposed to keep out of the sun! I’m looking for a factor 50.
Again all my love and hugs to you, Carolyn. How are those wonderful babies? Well, not really babies any more! You must be so proud. Always thinking of you.
Bon, How low was your haemoglobin to need the transfusion? I've been very tired and mine is low. FF
I'm sorry to hear about your pain and sickness, disappointing when you have been doing OK. At last you won't have to wait long for a scan and hopefully for results. Will be thinking about you. xxx
I had a blood transfusion a few weeks ago because of low haemoglobin which made me feel a different person for a while but now I'm back to feeling wiped out though my haemoglobin hasn't dropped much. Hopefully things will improve during the break.
Hi again everyone.
I hope that things are still looking up for you Carolyn and that everyone else is as well as they can be
I was supposed to start my 7th cycle last week but I have been having really sore pains in my abdomen, chest and back. I was so disappointed when he said that for that reason he wouldn’t give me the cape until we had found out What was causing it. Even though my TMs had fallen to below 100 for the first time in a long time and I have had few SEs which are all well manageable
The pain is really quite bad at times and I feel nauseas.....today I have started being sick as well.
Has anyone else had similar——- he ordered a scan which came through for Thursday this week so not too long hopefully to wait for answers.
My husband wonders if it is gallstones and not at all cancer related??
Happy news Carolyn! Keep going, you'll show those white coats their predictions are wrong! So pleased for you (((((hugs))))
Keep paddling Carolyn this boat isn’t ready to sink just yet! 🚣🏼♂️🚣♀️🚣♀️🚣♀️ You show them girl! 💪🏻💪🏻
Ramade, Still on E & E. Will be 2 years in May! Praying for more years out of it!
I liked capecitibine when I was on it! I was on the full dose. I wouldn't mind revisiting it. Hope the lower dose helps you, so you can continue on it! Best widgets!! FF
Carolyn........things are looking up!! Improvements! And you are sounding positive and well. I’m having good feelings for you now. An unexpected turn in the road. So thanks for posting and keeping us in the loop. I collected my cape pills today. So many warnings and advice but nurse....who I already know well....... very supportive. Hope they let you go home soon........Easter chocolate bunnies in the shops now..........hubby take note! Always thinking of you,
hi ff, thanks for your reply. i carry immodium in my handbag always now and a box upstairs by the bed and one downstairs in the kitchen. i am determined not to be in hospital again with dehydration and horrible cramps.
How are you doing now?what treatment are you on?
big hugs across the pond
oh Carolyn what a relief for you, so pleased. now get those twins over and give them big hugs
Carolyn, what a roller coaster. Wish they could come up with scan results a bit faster. I hope you have some more good news soon
What good news. You are one strong cookie. Have they mentioned how your lungs are doing? You thought a lot of the symptoms you are suffering was to do with your heart tablets.
Hope everything gets sorted and you are able to go home.
Carolyn, That's crazy! Now, where is the bag of chocolate! Chocolate is a better fix than what they prescribe or maybe some eye candy! Both please! FF
Ramade, Do you take anything for the diarrhaea? I don't know if it would work for you, but the anti-nauesa drug zofran really settled my stomach one time, but constipated me. Just one pill constipated me. I've never taken them again. I wonder if it might help you. Maybe you could give it a try.
Never understand why these meds are a blessing for some and a nightmare for others! Our bodies can be so uncooperative!! Hope you can find a happy medium soon, so you can continue it. Hugs! FF
Loving your sense of humour Carolyn 😂😂 Hope mri shows positive results that can then be helped. Maybe you still have time to squeeze in a cream tea? 🍰☕️ Sending huge hogs 😘
Well waited for 2 weeks for scan results ....shows livers ok. Still in hospital having mmi scan at 2.30 looking first for heart blockage oncologist says easy treatment if it is. ..whoops one week to live and now this
When cape failed last July I was put on taxol for 12 weekly infusions. After 6 I had a CT scan which it showed it had worked. I only managed 10 as came down with neopathy in my fingers. From November last year I have been on tamoxifen which seems to be working. Yes I can understand regarding not wanting to end up on hospital again.
Have a good weekend .
Hi Linda,thanks so much for your reply, i have some Loperidime which i will take when needed, don't want another hospital stay with dehydration that's for sure. Are you on taxol now? they said that would be my last option even though i took it many years ago apparently it might work again. i have become resistant to hormone treatment now.
Carolyn, thinking about you always
Pleased you were able to get the tablets. Like you I started on 1800mg twice a day for 3 months got reduced to 1500mg twice a day I was OK whilst taking it on the week off I got the trots. I was only on it 10 months as it stopped working. Still managed to carry on with life as normal but I did not feel 100% well. I felt tired all the time. The hospital can prescribe something if it is affecting your quality of life.
Thanks Linda, i just started last night with lower dose from 3600mgs daily to 3000mgs daily. Had first dose last night then this morning, already got a churning stomach threatening diarrhoea so i decided to miss tonights dose.
just wondered if you or anyone gets this and what to do.
love to all as always
Thanks Nicky, yes i think it was lovely Moijan. i used to pm with her.
Carolyn, hope you are comfortable now and those nurses are looking after you well
Hello Carolyn. Just wanted to send you a big hug and to let you know that....along with so many others.....my thoughts are with you