20-11-2018 02:07 PM
19-11-2018 04:02 PM
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
19-11-2018 01:42 PM
19-11-2018 01:34 PM
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.
19-11-2018 08:43 AM
18-11-2018 06:54 PM
18-11-2018 04:07 PM
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.
17-11-2018 07:06 PM
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
17-11-2018 10:22 AM
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
16-11-2018 07:06 PM
16-11-2018 02:58 PM
16-11-2018 02:08 PM
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
16-11-2018 02:00 PM
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.
16-11-2018 01:55 PM
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.
15-11-2018 09:23 PM
15-11-2018 09:12 PM
15-11-2018 09:01 PM
15-11-2018 08:30 PM
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
15-11-2018 07:28 PM