I just wanted to let you know that the same thing happened to me. I was strongly Oestrogen sensitive and then went to triple neg. That was two years ago and I'm doing well on treatment so far.
i have just been diagnosed again , I was
positive and now triple negative.
I think that if you get severe side effects your dose will be reduced but it's worth asking your consultant in any case. I started off on a low dose and was coping but it was then increased but not to the full dose. I have been on capecitabine since 10th January but now have awful side effects and am feeling so miserable. My mouth is really sore and I find it so hard to eat and talk. I can hardly eat as every thing, apart from yoghurt, is such an effort. My feet are really painful and I shuffle to walk. I went to pick up my tablets on Wednesday and was told I would have another week off because of the side effects and I hope then it will be reduced.
Hi there, sadly my last scan showed that Capecitabine, after 6 cycles, had stopped working. Apparently this does happen and you normally get changed to a different drug. I have secondaries in my lung lining and lymph nodes and suffer with quite sever breathlessness. Well my oncologist says I have the right criterea for the new PLASMA MATCH trial. Have had to have a bone density scan, ecg, loads of blood tests, and start the trial next wed,( a month after I finished CAP ). So have got everything crossed that this works. Am clutching at straws now, just want something goo to come out of this.
ais anyone else on this trial ? As would love some feedback.
I do have my tumour markers done and mine have so far come back as low. However my oncologist told me that in breast cancer they are not much use as an indicator of anything taken on their own. I guess as Nicky says it is the scans that show whether a treatment is effective. All the best to everyone, Jane xx
Not all oncologists/hospitals use them so you would need to find out if yours does. If they are used your oncologist will ask for them to be done, or checked, when you have your blood taken, it will be the laboratory that will look for them and it’s not part of any extra testing. If they are used your oncologist will look for a general trend in them ie whether they are going up or down or remain stable. From this they can usually tell if a treatment is working or not but further checks such as scans are then normally done to see whether a treatment is still being effective.
My hospital didnt used to check them but this last year or so I have had them reported on so I guess their laboratories now check for them.
Hi Nicky and Erica
I do seem to be a bit of an anomaly... don't know of anyone else who's gone from "strongly HR postive" to triple neg. Ho hum, but I assume there's no mistake I'm under excellent care.
Thank you Nicky and like you say, plan for and enjoy treats big and small. Barbados was one very huge unexpected treat so life throws bouquets as well as brick bats at us!
Keep posting, you are such an inspiration
You are doing things right it’s just that a lot of ladies don’t add to a thread if they feel they haven’t had the experience if that type of secondaries. I’ve replied as I do have. Weekends can be a quiet time on here, it has always been that way, whereas more replies seem to be added in the week as we’re often on our own or at least not so busy with the ‘real’ world.
In answer to your question I just live each day as it comes, plus a few short term and some long term treats. Some get cancelled, some come along before I know it!
Maggie, good for you, Barbados, very envious but you go girl! My liver mets have shown as HER2+ but having rechecked both biopsy results they were very weakly positive. So I am classed again as HER2- and have been treated as such ever since. However when I had my liver resection done in 2018 the largest lesion tested as triple negative which I have never presented as, similar to what you have said about your secondaries. This would explain why this lesion used to grow whilst on hormone treatments but respond to chemo. Glad I got rid of it! Maybe a biopsy is worth having done but don’t go thinking about things like that whilst you have a rum punch in your hand ha ha 🍹Good to hear about the insurance as well.
Hello , I havent t been told what my mets are , I haven’t been offered a biopsy to check here in tbe uk ?? I just assumed it was what the original bc was . No one has even mentioned it changing when it comes back ??
which is a bit of a worry 🤔
Hi Erica and Nicky,
I may be an exception to the general rule but my HR+ primaries came back 10 years later as triple negative secondaries in my bones and liver. Chemo the only option for us triple neg ladies .. but .. I have now been on Capecitabine for over 18 months. It reduced everything a bit then kept it stable. Sore hands and feet are the biggest issue but in addition to masses of Aveno or Udderley cream my Onc also prescribes Vitamin B6 tablets (pyrodoxine). On a good week I can do 10 mile walks still!
I'm now on a 1 month chemo break to recover energy as was getting more tired and am writing this from Barbados, on a short sunshine holiday by permission of my oncologist and Boots brilliant, reasonable travel insurance.
So I do hope Cape does the same for you Erica, good luck with it and thanks Nicky for your lovely reassuring posts. Do I remember you writing that your secondaries went partly triple neg then back to HR+? Just wondering if I should ask for a new biopsy to check mine. Last one was 21/2 years ago I guess things can change
Hugs to all
Good morning Nicky,
Thanks so much for replying, you seem to be the only one I’m getting any response from , I never know if I’m doing things right on these forums , I didn’t get on with the Macmillan one not sure what I was doing wrong .
You sound amazing, what an inspiration you are. How do you find the strength of mind ? I find light gardening and walking helps oh and the sea !
I had bone mets diagnosed in 2008 (5 years after my primary) then I had liver mets diagnosed 5 years after that in 2013. I am hormone positive so have had either hormone treatments or chemo depending on what’s going on! For a while I was classed as HER2+ instead of HER2- (which I’d always shown as being on biopsies) but as it was eventually determined to be very weakly positive I have not had any further treatment that involves Herceptin or similar drugs.
I haven’t really changed much if anything with my diet, I continue to eat healthily, exercise (mainly by walking these days although have done gym sessions, classes in the past) and generally live life as normally as I can.
Hi Jo ,
i just thought I’d let you know what happened to me when I was on 4 pills a day. It was ok at first but my hands and feet started to get very red and sore after the second cycle they peeled in big plastic line strips which I had to cut off ( never pull the skin off !!)I then got terrible stomach cramps and was hospitalised with chemo induced diarrhoea, it might have been a bug picked up but it lasted 5 days , I had a break then they reduced my dose to 3 tablets twice a day . What a difference ! So much more tolerable , no hand or feet problems , a touch of loose stools and wind 🥴 but apart from the usual chemo fog brain and a bit of a bad temper 😬 ( my close ones would say VERY bad temper 🤫) I’m finding pills very do-able . This thread has given me a boost too to keep popping the pills and carry on !! 👊🏻💪🏼🙏🏻
Hi Helen, I’ve been wondering why they don’t remove the bit of liver affected , do you know why it’s not an option ?
Hi Nicky, thanks so much for your excellent reply,it’s very encouraging to know you’ve been kept stable for all these years . My cancer is oestrogen positive is yours ? You didn’t mention where your secondary is. Mine is in my spine , shoulders and a bit in my pelvis , all stable at the moment . I didn’t believe my breast care nurse or oncologist when they said 10yrs and over but now I do. Do you do anything else , like meat free or dairy free ??. Best wishes Erica .
Just to reply to your question about having hormones whilst on chemo. It’s not usual to have two different types of treatment at the same time for two reasons. One so that the oncologist knows which one is being effective and two so that you are not using up (so to speak) 2 different treatments at once that would then both be ruled out for use at a future point should you have progression. The chemo you are on, Capecitabine, is geared towards hormone positive cancers (it’s not very often given for hormone negative and/or HER2- breast cancers as far as I know) therefore it is targeting the right receptors etc. It is more usual to have a hormone treatment after having chemo (as often is the case for primary BC) to keep maintaining or improving stability (for secondary breast cancers). I use the word ‘usually’ in all of this as there can be exceptions and I don’t want to sound like I know it all, ha ha, it’s jus5 that I’ve lived with secondary BC fir over 11 years now so I’ve had a lot explained to me during that time!
Good luck with Cape, it’s a marvel chemo treatment but dies have it’s side effects as all treatments do which is probably why you feel angry at times (as your other post says). If you have time to read back over the earlier posts in this thread (it’s a loooooong thread so you may not!) there’s quite a bit about SEs that others get and how they affect them. I had Capecitabine back in 2013 so I appreciate how it can aff3ct some of us in different ways to others.
Wow that’s so encouraging!!! May I ask, do you have bone mets ?
Ive just started my meds ( been on them a few months) sometimes I don’t finish all the pills .
You have given me new hope !!
Thank you 🙏🏻
Hi , is your cancer Oestrogen fed ? , mine is . I have bone mets and am in Cape and Denosomab ( not sure of spelling) . My question is why they don’t give us hormone treatment with this drug . Nothing is blocking my eostrogen but my Onc says the drug is killing the cancer cells . Just wondered if you have been offered anything else ?
Also do you find you get angry on Capecitabine, I get the red mist and have to try to control my bad temper but fail miserably with dreadful outburst !!
thanks for any advise x
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
Dear Bon, I am very sorry to hear about your scan results. Lots of hugs. Ag. Xxx
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 😊😊😊
Good luck Agy, let us know how it goes.
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