Thanks Tatyana, happy belated birthday sounds like you had a lovely day. Hope you have a good weekend too and that the weather stays nice.
Sorry to hear your news. Hope everything goes ok with the new treatment and thank you for your advice, it has given me hope xx
I transferred from Cape to Eribulin and it was heaven- the SEs so mimimal in comparison, and Cape was easier than my previous chemo too except I suffered dreadfully with my hands and feet.
iam on prophylactic pen vfor my lymphoedema...does seem to help keep the cellulitis in check..though I don’t want to tempt fate....prof mortimer recommends this if you have more than 1 bout of cellulitis a year, I also have antibiotics ‘in case’. And I have to say that one worry I have is that I lose a nail on that hand...as obviously I’d get cellulitis....butam travelling hopefully on Paclitaxel l
Thanks for all the advise. Unfortunately, cape has only worked on some of my enlarged lymph nodes and not the ones that have recently appeared near my lungs. I am no longer on cape and will start Eribulin next week. No more hand and foot syndrome 😊, hopefully the new SE's will be managable.
I wish you all the best with your ongoing treatment.
Hi everyone, thank you for your advice. Just finished my first cycle so have now got a week off tablets. I’m seriously thinking about going to see my daughter and returning to work, going to wait and see what bloods are like next week. My oncologist wasn’t too keen with me going to Greece last year so hope he will be ok this year.
Hi Toby joe, I was on capefor21/12 and wish I’d been more adventurous...wanted to go back to Oz, which would have been quite possible...other than I was studying art at uni and also my partner didn’t want to go...,so kept putting it off...now I’m on hv chemo most of the time and that has limited my options.,,,you sort your insurance, go and travel——beiing really careful tho....but GO🤗🤗🤗🤗.
HiNicky, my onc said they used to use vit b6 for pn, but found that it worsens it.....sorry.xx
Thanks all for such a warm welcome. Hi Tatyana, I was diagnosed in March 2016 and also had fec-t with partial responce. Followed by a lumpectomy in Sept then lymph nodes removed in Nov. Radiotherapy in Jan 17 and a mastectomy in May, then Gemcarbo in Aug. I am also in the same situations as to whether or not the cape is working but I'm not sure what they will put me on next as I have already been on gemcarbo. I also have lymph nodes that are affected and inoperable. Good luck for your scan results next week. Mine is now confirmed for the 21st. Hi Mulligans, with regards to the SEs I'm not doing too bad. I have sore hands and feet which come and go, I have vitamin B6 for this and am also using lots of hand cream. I have felt sick a couple of times but this has passed.
I completely back up what George and littlelizzie have said about living with SBC. I have been living with it for over 10 years now and during that time have travelled many times both in Europe and further afield. The main thing is to get travel insurance and there is a very good thread that lots of us have added to. It is more difficult and expensive to get insurance for secondaries but it can be done. Have a look at it. Having said that when my daughter was living in Paris for 3 years I didn’t take insurance out for every trip as it would have been too costly (at the time very few if any companies were offering annual policies for SBC) so I used to travel with my EHIC card and a general travel insurance policy which came with my bank account which covered all the other aspects such as travel delays etc but not my SBC. I also continued to work after my diagnosis for several years because I enjoyed working with the people at the company I was at (I didn’t love the job as much but the people made it worth it!) but then gave up work when the company changed hands. I did get another job which I really enjoyed but the very nature of it, visiting different hospitals and a change in treatment, meant I had to give it up. I have made the most of my time now I don’t work and get out and enjoy doing things I want to do. Having SBC certainly stops you ‘sweating the small stuff’!
I am new to this and was just wondering if anyone has an experience of capecitabine with triple neg bc?
I have been taking it now since the beginning of Feb, I am on cycle 5 and take 1950mg twice a day.
Not sure yet if it is working waiting for a CT scan date w/c 21st.
Hi littlelizzie, can I ask how soon you returned to work after starting Cape? I work in a primary school office and was wondering whether I’d be able to return. You all sound so positive about life, I hope joining this group a bit of that positivity will rub off on me x
Hi Tatyana, thanks for your reply. My hands are starting to itch so I’ll make sure I put the moisturiser on.
My daughter has just moved to Kos and we had booked to go in August. My oncologist advised me not to go because of the side effects but after reading your planned trip I’m beginning to wonder whether I should re- book. Don’t you worry about low immune system? That’s my main concern and the reason I don’t know whether to return to work.
Have a good holiday, I’m so jealous x
Hi Cape Ladies on this not so lovely afternoon. Hand and foot problems have hit with a vengance! Had to have two days off work this week as I can't walk. Also have a blister on the sole of my foot which is about the size of a 2 pence piece. That may well be all the walking I did in Brighton last Saturday. Will be asking my oncologist for a reduction on Friday when I see her about cycle 3. Still determined to try another AI further on down the line.
Tobyjoe, the side effects of Cape are not as bad as IV. I'm 42 and still working full time. I've had the hand and foot problem this cycle but as others have said, this can be remedied by a reduction in the dose.
Tatyana, have a wonderful time in Greece
Hope everyone is having a good weekend. What a change from last week!
Hi all, I’m new to this. I’ve just started Cape this week. So far the side effects have been nothing compared to other treatments I’ve had. Is this normal? Will it get worse the more I take? I expected side effects to be similar to the other IV chemo I’ve had.
Hi Mulligans, I was on Cape for 2 1/2 years and my hospital, the Royal Marsden had a regime of one week on/ one off. They said that in their experience it worked just as well and the SEs were much more doable. Might be worth a mention to your team? I was on 3600 per day. Wishing you luck with it x