Hi Everyone, had my review today and the Onc sent me for a chest xray as I am so breathless all the time. Fortunately he said the xray was unremarkable but is giving me an extra week off to see if I feel better during the coming week and also I requested extra "time off" as I'm going to an "Elvis" show in Coventry on Sat night at Grosvenor Casino. I think when go next Friday for my review and next prescription the Onc will reduce my dosage and then maybe I'll feel a bit better and have a bit more energy.
Thanks to all of you who responded to my previous posts...its a real booster to hear from you and hearing all your positive attitudes. When I was first diagnosed I wouldn't plan for anything thinking its not worth it as I probably won't be here. But now I have changed my mindset as I hear of so many long term survivors. In my area we meet every month, organised and held at the Hospital and lots of the girls there had their diagnosis years ago and are still going strong !
Hope you all have a good weekend,
Love Carolyn xxx
Hi I hope you dont mind me joining your thread to find out more about Capecitabine. I have just been diagnosed with Secondary BC after 9 years and several local recurrences. Due to start Capecitabine in two weeks so finding the advice very useful.
Well I have just completed my first cycle and have to say that on the week off I felt wonderful and was pleased that some of the minor SE Ihad ie feeling wobbly and ligt headed disapperared as I had convinced myself that the cancer had spread.
It is amazing how over active the brain becomes in the middle of the night as I lay awake !!
The onc is sending me for a bone scan just see if there is any other activity so fingers crossed that comes back clear.
I am now trying to get to the point where i feel able to make plans in the future and I spoke with the onc about travel. He dismissed some of my ideas such as a cruise due t high risk of infection but yet said that a trip to South Africa to visit family may be an option. He has advised waiting to see how effective this treatent is but i so hope that I am able to make this trip.
I'm hoping that as i start my second round that my energy levels don't dip and have some nice activities planned.. I'm heading over to Harrogate today and very much looking forward to it..
I think it was Lynne that mentioed a possible meet up in Yorkshire for coffee and if this were to go ahead I would love to meet some of you ladies.
Take care everyone
Hi again everyone. Just finishing my third week off and off to pick up my fourth packet of pills tomorrow. This week has been as bad as when I am taking the pills but compared to many my SEs have not been too bad. Hope that doesn’t mean the cape isn’t working - tho I have read that SEs don’t affect results. Hoping to get a TM reading tomorrow which will give me further reassurance- they’re have been on the downward trend so far.
Graceland Girl hope that you’re feeling better and that they reduce your dosage which in turn reduces your se’s
and George so pleased that you are remaining stable after 15 months makes us all very hopeful. I agree about planning as well, I have always been a planner - it is our Golden Wedding on Boxing Day and we are planning a party in March.... when life isn’t so busy and the weather is better...can’t expect people to travel at such a busy time of the year. I have sent out ‘save the day’ invites. The pub we want to have for the party gets booked up very quickly so daren’t leave it too long.
Best wishes Carolyn and and Happy girl.
Just wondering where everyone lives I am in Yorkshire.... close enough to anyone for a coffee somewhere???
Hugs to all
Hello Graceland Girl,
You are not alone with these SE's, I have just finished my 2nd cycle and my breaks seem much the same as yours without the breathlessness. I do take an antisickness pill in the morning even when on a break because it helps with the nausea, so it might be worth a try.
Pleased to hear the Doc will review your dose it seems to help some cope better with SE's from what I've read of other Cape ladies on here, so fingers crossed things improve for you soon.
I feel the hardest thing is to continue treatment knowing it makes you ill. But we have to focus on the possible improvements and that's what helps us keep going.
Hugs and keep going
I'm on my week off from cap after completing my 3rd cycle ( 2150 x 2 a day ) I definately feel worse when on the break, which I thought would be the time to feel better. I am so tired, breathless get stomach ache together with the big D don't want to eat and consequently cannot stand drinking all I should on an empty stomach as it makes me feel sick. I went to the Hospital today for my blood test and went to the Emergency Assesment Room where they put me on a drip for 2 hours. The Dr I saw took lots if notes and he said my Onc might reconsider my dosage when I have my review on Friday.
In the meantime hope all who read this are feeling well and I look forward to hearing if any other ladies have the same SEs. By the way...do we have any men in this thread as I understand men also can be affected by breast cancer.
Love Carolyn xx
Hi again everyone, hope you’re all as you can be. It’s cold, wet and miserable here today in Yorkshire.
like you Carolyn I feel the cold more on Cape, I was on Letrozole for almost five years - didn’t have hot flushes but never felt really cold.
Hope that the liver biopsy goes well for you Bel. and that you can start your cape and start to feel better.
This is my week off on my third cycle - Finished Friday and had a bit of the big D for a couple of days, also really tired and a bit shaky but today I feel much better. Will be collecting my fourth cycle on Friday after my bloods on Thursday, so fingers crossed for good results. Had low neutrophils after my first lot but when I asked the nurse if there was any supplements or diet changes which would help she said that there wasn’t. - just one of those things.
all the info about doseage are very interesting.. thanks for that everyone
lovey phone call from my son today who says not to Christmas shop for food, him and his partner will shop and arrive on Christmas Eve and he will cook on Christmas Day- so I will just get a few extra treats in.
good to see so many positives around cape chemo. I have heard this morning that I can’t start cape till I’ve had liver biopsy with is now scheduled for 30th. Cape to start on 10thDec!
thanks for info on biopsy still a bit nervous but just want to get it started.
ive now had 7 weeks where I’ve been shaky, lightheaded and wobbly so not been able to do much without a place to lie down very nearby! I’m hoping that Cape will sort me out and make me able to get out and about more.
In our area we don’t have a SBC Nurse so I do feel very isolated. We so need one but no money! Apparently!!
Mad when your support so well with primaries then bang once you get secondaries you’re on your own!
Hoping to get some further support from palliative care team at hospice.
Keep well everyone
Thanks for the info and link to the calculator tool, really good.
I don't think the dose can be the same for everyone because we all seem to have different tolerances and some have other health problems. I am managing my SE's 'reasonably' well except the fatigue and I don't like spending day after day in bed unable to function because I feel so unwell most of the time. There seems to be many women who have or are taking reduced doses, so it can't be an exact science. AND holding onto that thought I will be able to move forward with the help of my oncologist and the lovely support of this community.
Thanks for your response and good luck with on your Golder Wedding Anniversary planning something to look forward to and enjoy.
I don't know how the medics estimate doses, I was told height and weight. I am 5 feet small and weigh 70k like you with gastrointestinal probs which were caused by first line chemo. We just have to trust them when they decide and hope they will adjust if needed. I hope your week off is as good as it can be and the big D goes away soon.
Hello Happygirl...interesting to see that you are on the same dose as I am. The Onc told me that he was starting me on a low dose because I have gastrointestinal problem which causes diarrhoea and since it can also be a SE of cape he didn’t want to aggravate it.
I must say that I didn’t think that it was a low dose but I am quite tall (5’8”) and weigh about 72k so perhaps for me it is.
I am just coming to the end of my third cycle, starting my week off. I am feeling tired and have the big D today so taking it easy.
Thanks for responding Carolyn - I think that I may be the same in feeling worse during my week off... a bit shaky as well today.
I am also trying to get into Christmas mode, It is our Golden wedding anniversary on Boxing Day and we are having a family get together, just close family and our children will sort the food. Hoping to have a bigger celebration in the early spring when people are more able to travel. Really want to stay well for that...
Hugs to all Cape users
Good to hear your Cape is not causing too many problems and you have got to your 5th cycle (well done) after horrid previous treatments.
I'm just coming to the end of my second cycle but not sure it's any better only that I am managing the SE's a bit better. Like you I am finding 'Sleeping' all a part of the course but not eating so much as nausea seems to govern that even though I have tablets that help. I'm on the max dose for my hight and weight 2000 x twice a day. So I hope to discuss a reduced amount when I see the oncologist on 26th then the next cycle begins. I am determined to give it a go and apreciate all the sharing that goes on in this forum it really helps. Thank you.
Wishing you well as you continue your journey
Hello George, I’m not on this treatment but often read the thread. Is this book by one of the women who does the ‘You, Me and the Big C’ podcast? I only know the name of Rachel, who used to present the news on bbc5 live and sadly died recently, but I remember one of the others has bowel cancer. Thank you for the recommendation, will definitely order a copy. Enjoy your weekend, Kate x
I have had 2 liver biopsies done, around 3 years apart. They are usually just a day case and done under local anaesthetic with sedation if you need it. You need to fast beforehand and afterwards. The procedure is usually done using ultrasound guidance so is done by one of the radiologists or whatever their actual title is. It is u comfortable rahrt than painful and is a bit of a weird feeling. Afterwards you have to lie flat for at least an hour, possibly 2 (I can’t rmember) to make sure there is no internal bleeding. You can then gradually sit up and I think I went home about 4 hours, maybe more, after the procedure was done. You should have some one to drive you there and be with you once discharged. There is some more,aides who’ve had this done, some more recently that me, on the treatments and medical issues part of the secondaries part of the forum under ‘Ablation or liver resection’.
Good luck with Cape, sorry to hear docetaxel didn’t work well for you.
Hello again everyone- some good reading on here for me today. Have not visited for a Week or so.
I am on my last day of my third cycle on Cape...well I take the last tablets this evening and then have my week off.
Today I am feeling tired and a bit achey but on the whole my SEs haven’t been too bad. The tips of my fingers seem to be getting a bit dry and flaky but my feet seem to be okay. I sometimes feel Nauseous often a biscuit helps, but if not I take an anti sickness pill but not many in a week. My mouth is a little sore but not massive ulcers like I had on the E & E, I have a teaspoon of Manuka honey each day and I think that helps. Obviously I am hoping for a lengthy period of time on Cape especially if my SEs remain tolerable
I have read so many posts today and I am sorry I can’t remember all of your names, But thank you all for your input it really does help to not feel alone, especially on the ‘down’ days
Your posts and advice are very helpful CAROLYN and I will certainly look up the book that you recommend GEORGE.
Hope everyone is as well as they can be and all of the ‘new’ ladies get on with this treatment.
I’m just joining this thread as I’ve been on Docetaxel 6 rounds which finished in July for liver mets, all ok for about six weeks then felt really poorly, GP thought it could be flu, amongst other things, but eventually after a CT scan last week, was told by oncologist that I now have extensive mets to liver and also in lungs too. On the plus side bones stable!
I’m rather gutted, waiting now for start date for capecitabine. He also wants to do a liver biopsy to check it’s still the same as my primaries from 2005. Can anyone give me any info on liver biopsy, bit scared!
Im hoping that Cape is easier than docetaxel as I found that really hard and disappointed that it didn’t really work!
reading though post it seems that lots of ladies find it easier if the dose is right. I’m starting on full dose so a bit worried.
Any advice would be very much appreciated.
keep well everyone
Thanks for posting your advice about Cape It has helped me realise my own situation better. I am in my second cycle after other treatments for mets progressions and feel bloody awful almost non functioning in fact. I had decided to ask about a dose reduction on my next visit to the oncologist as I am not coping well with SE's spending 20 hours a day in bed totally exhausted when dosed and 12 hours plus varying sofa time shared with more mattress time when on the days off. So I now feel more confident in asking for a dose reduction. thanks for giving me confidence to move forward.
Yes, when a treatment fails to work for a long time it does rock our confidence. I hope Cape works well for you and it is a completely different treatment to the hormones you have had before.
I can't answer you question about tumour markers as I don't get them done however I know its more about the trend for you, not necessarily what number is normal. Obviously very low numbers will show less activity but they are not reliable for everyone so it will depend on what the trend is if you get yours done.
As to adjusting to Cape I was on it some 4-5 years ago and it took me a couple of cycles, and a dose reduction, to cope with it. Initially I was on a 100% dose but quickly went down to 80% which was then effective for the 18 months ot so I was on it. I really struggled to begin with but after a couple of cycles I felt my body had adjusted to the daily doses and didnt feel quite so tired and generally got on doing the things I wanted to do. I did get the Big D occasionally on my weeks off and that seems to be quite common. I also had a few splits on my finger tips and a few cracks on my feet (even though I moisturised all the time) but these did clear up especially if I had an extra week off which happened on a few cycles. If you suffer badly with side effects do speak to your oncologist, there is usually room to change the dose so you get the right balance between effectiveness and quality of life - which is what they are aiming for.
Hello Sarah Senior... hope you are feeling a bit better now. I'm on my 3rd cycle of cap and for me its the feeling of a complete lack of energy thats the worst side effect.. Apart from having intravenous chemotherapy I have been on letrozole and exestamene which didn't work, then tamoxifen for a few months which then stopped working..hence we are now trying cap. As for the tumour markers, I can't actually remember what number they gave me. I think it was around 400 which was a big leap from the previous number. They haven't taken the TM in recent blood tests...the Onc omitted to request them, but they requested them on my latest blood test, and should get the up to date info at my next review in a couple of weeks.
All the best..Carolyn
Hello to all the ladies on here, I of course didn't know Barton but send my condolenses as it is always sad to hear when someone has lost their struggle.
I am now joining this thread as having been on letrozole and pabociclib for only two months it appears that it wasnt working for me sadly so fingers crossed that the cap is more effective.
I am only starting my second week and feel out of sorts so hoping that my body adjusts to it.
I see that a number of you mention tumour markers and just wondered that for those of you whose are going up what level is normal and how much do they tend to go up.
I guess that I am struggling at the moment as all I can think of are the oncs comments in relation to timescales due to the fact that the first traetment didnt work. I am finding it hard at present as well as much as i have a very suportive network of friends both my daugters have gone away in the last couple of months one to go travelling and the other to go to uni and I know that my youngest is struggling with things.
Hopefully I can take some comfort and support from this forum and knowing that so many of you are doing well on the treatment.
So sad to hear about Barton.........fran. I never met her but of course read her posts on these forums. She was always so welcoming, helpful, and caring. She is safe now of course, but her wonderful sister will miss her down here. So hard to miss loved ones. But heart warming to read all the warm comments. She was loved and so appreciated. Fly high, Fran.
So sorry to hear about Barton/Fran, another lovely lady lost too soon. Do send my condolences to her family if you are in touch and sending hugs to you. Thank you for letting us all know.