Haven’t posted on here in ages but just thought I’d update you all. I’m just completing my 21st cycle of capecitabine and it has kept my bone mets stable for almost a year and a half with minimal side effects. For those of you just beginning your Cape journey thought thought this might give you some peace of mind as any new treatment is scary.
For me it seems this part of my journey is now ending as I have a new bone met so the Cape isn’t as effective as it was a year and a half ago so on to pastures new that I hope will be as effective and as kind
Hi. I am due to start a combination of Lap and Cap in next two weeks. I have seen from other peoples comments that many receive treatment without side effects which are too bad. Just wondering if anyone has been able to work as well. I work part time and am hoping I will be able to get back to work once used to chemo cycles. If anyone has any experience of working on this combo would appreciate their comments. Olives
I started Cape on Monday and my dosage is 500mg 4 tabs twice a day for 2 weeks then 1 week break. Then I think it’s 3 weeks on and 1 week off but that will be confirmed when I see Onc on the 19th May.
My original diagnosis was back in Feb 2012 with DCIS and IDC in left breast, 1 lymph node involved.
Two weeks ago I had the diagnosis again but this time as well as a primary cancer in the right breast I have pleural effusion in left lung. I did have pleuredeses a week ago but the fluid has returned and rather than having the risk of infection my ONC has told me to crack on with the Cape.
Is there anyone here with the same secondary in the pleura?
I don’t find it hard to fall asleep but I tend to wake at 4 am and feel very restless. I’ve given up caffeine so I think it must be worry of this new diagnosis. I feel exhausted and because of the fluid in the lung I find it hard to do anything that requires exertion.
I couldn’t help noticing that some of you have been on Cape for a while and has concerned me mainly because I was told by my Onc that I’d be on it for 6 months.
I do hope you are all feeling well and looking forward the Bank Holiday week end.
Hi Macie, glad things are going ok for you. I too have been tired but was anaemic so had a blood transfusion last week & hoping for a bit of a boost! From my various blood tests my lowest point seems to be at the end of the two weeks on then it gradually improves during my week off. I took a weeks break to go on holiday as I was a bit concerned about infection & my oncologist was happy with that, I think generally the risk of infection is lower than with IV chemo. Hope your next scan is positive.
Best wishes
Smartie x
Bev1004 - I went to the GP Dec 2012 with a cough I had had for a few months. Gp said it was reflux and gave me some pills. Roll on April 2013 and I was diagnosed with bc - still had cough - and in Jul a second. diagnosis. On FEC until Nov 2013 when I started tamoxifen and mistletoe therapy. Cough stopped within 3 weeks and scan in Apr showed reduction in lung mets. Ive got a cruise booked for August. Enjoy your holiday - bet its hot! X
Just a quick question…i asked onc on tuesday if i would be having anything else in between Cape as I noticed that a lot of ladies are on some hormone treatment when stable, but he said because i was only weakly positive he didnt think it would be much benefit to me.
I thought being post menopausal i would have something. Does that mean i will be on cape continuously?? Im a bit confused by all this.
Also…they told me to stop taking tamoxifen as soon as i had this dx so could the tamoxifen have helped cause this secondary dx by fuelling the oestrogen?
Sorry i may seem a bit dim but cant really understand it.
Love to all
Bev xxxx
Thanks Helen and Dani…thats explained it better! So if after these first 3 cycles its shrunk by say 25%, will they give me another 3 cycles until it shrinks more?
and will they only stop it if and when it disappears?
Bev xxx
Off to the hosp this morning to see Onc after 1st cycle on Capecitabine. Starting second cycle today. I assume they’ll do bloods to check markers? Hope they’re down a bit…fingers crossed
love to everyone
Bev xxxx
Thanks julie…didnt have my marker results but all other bloods were very good he said. Also said he was keeping optimistic that things are working due to the fact my cough has almost gone! I suppose I wont get the full picture until my ct scan on 27 Aug.
My er status was weakly positive 3/8 which he said was nearer negative so hormone therapy prob out of the question.
Love and hugs…bev xxx
Yes helen…always take it around 10-15 mins after food. Felt fine after yesterdays dose. The hosp said they dont think it was the cape but to keep an eye on it.
My daughter thinks it was because I fell asleep after coming home from work with the cool fan blowing on me. That combined with the heat and a long day at work…over fatigued I expect!
Enjoy your weekend. Weather glorious again! But am keeping in the shade
Love bev xxxx
Hi ladies, I’m new to this forum. I’ve just started Cap today and would be good if I can pick your brains! I was on Taxol/Gem but only had two treatments as I was neutropenic both times. For some reason my onc is really reluctant to put me on G-CSF - he said it can impact long term immunity and he said it’s better if we save it?! Had G-CSF previously on FEC two years ago. Also I’m a bit worried about the dose - he’s put me on 2000 mg x twice daily…does this sound right? I’m also worried about becoming neutropenic again and wondered if this has happened to any of you? Thanks Katherine :smileyhappy:
Hi ladies…i was dx early May with lung mets and have just started my 2nd cycle of Cape this week. No side effects to speak of except diarrhoea (sorry if youre eating! ) this morning and once on my first cycle. But took 2 of the loperamide they gave me and it passed. Im on 1650mg twice a day.
Hope you find it manageable. Yes,drinking plenty oc water is good especially in this heat! I also drink coffee (decaf only) and tea. Also occasional fruit teas.
Not to mention the odd glass of pear cider now and then in the garden ?
Love and hugs. …bev xxxx
Yes I was on GSF injections from my 3rd fec 9 years ago. They were awful. Nothing like that with Cape. Hopefully the side effects will be minimal as they are now xxx
Thanks pam thats really helpful advice. It may well have been the UTI because yesterday I was very down and tearful and I know that can happen with water infections.
Yes I went to my first meeting in bcc offices on fri 18th. Only 4 of us turned up and it benefitted me a lot. The other ladies had bone mets so I was the only one with lung. Although Nicola said they usually have ladies with lung attending too. Looking forward to the next one!
Love bev xxxx
Hi Sher…good luck with the weight loss. Sounds like a good diet to be on. My weight fluctuates. Im 3lb less this week! I think its because some days I eat very little as I have no appetite then other days I can feel ravenous. But j stick to a food plan rich in veg and fruit, salad, fish and eggs. Lots of fibre too and avoiding processed foods where I can.
With the Cape, have you been on it constantly for 7 mths or have you had breaks?
Are they keeping you on it because they havent achieved the desired results yet? I was wondering what they have planned for me after my 3rd cycle and scan on 27 Aug.
Love bev xxx
Thats great news donns and thanks for replying. Im also taking 1650mg twice a day. I seem to be ok after the morning dose, full of energy…I work just 2 days a week at the mo instead of my normal 3. But after the evening dose I seem to get a bit achey and tired and usually find myself going to bed to stretch out and read around 8pm!
No other side effects yet.
Will they give you another oral one now? I would hate to go back to the iv of 9 years ago!
Bev xxxx
Hi Bev
Not sure what’s going to happen yet. Once they have scan results they will decide. I must admit IV chemo is a bit concerning!! I’m trying to stay open minded but as you know it’s s worry!!
Hope all goes well for you but keep creaming your feet …
Keep in touch
Donna
Dont think its only for TNBC, although my onc said he didnt think I would benefit from hormone therapy as my ER positivity score was only 3/8. My last primary in 2009 was er weakly positive and 4/8.
Nit confused over that because I read that 0-2 was negative. 3-8 was positive
Must admit I’d feel better if I could go on something else in between chemo.
But Cape is really doable. I’m back in work as I only do 2 days a week and no s/e’s to speak of except 2 episodes of diarrhoea in last 4 wks.
When are you starting and how many cycles?
Big hugs…bev xxxx
