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
It's done on Body Surface Area and is 1250mg per m2 twice a day (rounded up or down to the nearest tablet. You BSA is 1.83 (good calculator at https://halls.md/body-surface-area/bsa.htm ) so your recommended dose is 2287.5 am and pm.
Normally dose reductions are due to SE and usually to 80%, see how you go and then if no better a lot of us seemed to end up at 1500mg which is where I ended up after starting at 2500 (eek).
Definitely tell your ONC or Nurse at next appt. Hand and feet issues can be serious and permanent so don't brush it off
Although I’m not on Cape now I was a couple of years ago. I can’t remember the actual dose but I had a dose reduction of 20% pretty quickly and stayed on the 80% dose for the rest of the time I was on Cape - about 18 months. It shrank my liver mets and kept my bone mets stable in all that time until it stopped being effective. My oncologist used to say they have to get the balance right between effectiveness and quality of life so most will reduce your dose if side effects are getting to you.
Hi Mulligans. I also started my second cycle of Cape yesterday. I think that Lyndyloo is right in that they start younger people off on a higher dose. I saw my oncologist on Friday and she seems keen for me to stay on the 2150mg twice a day. As for side effects, I was extremley unlucky to get a rash across my chest that none of the doctors had ever seen before! It looked like 3rd degree burns! However, the same day I started the first cycle of Cape, I had my first Zometa infusion so maybe it was that that caused the rash. Other than that, I have had some stomach cramps (that may be the lactose in the Cape though as i don't eat dairy) some nausea and some 'looser' stools. Hands and feet have been ok, just a little tingley now and then. My main side effect seems to be tiredness but I still did a full week at work last week so it can't be that bad.
I don't have liver mets but I can see that George has had success on Cape so fingers crossed the same will be true for you. I have a malignant pleural effusion and one small lesion in my spine. They can't seem to find any solid tumours so mine is all just cells. My main issue is the breatlessness caused by the effusion but that seems to be resolving as I have lost 5lbs in weight but all my clothes still fit the same! I also asked my oncologist if could try another AI at a later date. I got 5 years out of Tamoxifen but only 6 months out of Letrozole. Think I'll do 6 - 8 cycles of Cape and see how things are then.
Hope you are all enjoying your Sundays