Thanks, Helen. I haven't heard that one either. I read something on the American site yesterday that said you are not supposed to drink milk whilst on Cap! That's a problem for me as I drink a glass of milk to reduce acid indigestion some nights. Perhaps I'll ask Onc sbout that next Thursday. I do know that grapefruit is a definite no-no, but that was the same with the IV chemos I had in 2011. The chemo nurse warned me again when I had me Chemo meeting before the first Cap cycle. By the way, have you come down to ground yet after your wonderful news yesterday? I bet you are still walking on air! And you deserve it!
Best wishes to all the Cap gang, Barton.x
Oh, Helen! Such wonderful news! That is a brilliant Christmas present for you! It gives us all extra hope, too. I am so glad for you. Love and cyber hugs to all Cappers. Barton.x
Sorry for abrupt ending there - tablet being very un-cooperative! Meant to end by saying, love to all Cappers. Barton.x
Thanks, Helen & Kaye. Yes, I'm a little concerned as Registrar promised he would write with results! The hospital doesn't normally keep me waiting this long - I usually get them the following week. Does this mean he read them wrong, and I should be worrying (already am, anyway!), or has he just forgotten? I see Onc (or Registrar) again next Thursday, and will ask then, but it's really frustrating after a promise! And it will be 4 weeks then! Helen, I do hope you have more luck than I did and really do get your official results tomorrow.
Hello, Spurs and welcome! It's wonderful you are NED, but it's worth the belt-and-braces approach of your Onc. I'm just coming to the end of Cycle 7 pills - last lot tomorrow morning (thank heaven - I'm finding this cycle really hard - mostly tiredness, but sore fingers and feet, too). I had a CT scan 3 weeks ago but have still not had the official report (although Oncs. Registrar did say he had had a look and everything looked ok), so still a little nervous. I'm absolutely amazed that you are managing to work full time - I bow to your perseverance and dedication! I'm only working 2 and a half days and by the second day I'm exhausted. Luckily I don't have to do the half day until Friday! I have been very emotional today, too. Crying in the office is SO embarrassing! Someone only has to say or do something kind and I'm off! Today someone gave me a cup-a-soup and I was off! I'm so fed up with it all! I love coffee but it tastes revolting at the moment. I'm finding it so hard to find enough to drink that either doesn't taste horrid, or I'm not completely sick of. Sorry for such a whinge when all I meant to do was welcome you to our Cap gang! And sorry for a large wedge of text with no paragraphs - my tablet won't let me do paragraphs without crashing, but my phone (with much less power!) will! Anyway, best wishes to Spurs and all other Cappers. Barton.x
Hi Spurs 79,
Sorry to hear you have had an emotional day-I too had a bad (emotional) night, couldnt sleep mind going hey wire with everything we are dealing with! The next day always seems brighter so I hang onto that thought while I am going through one of those low moods.
My toenails are manky too!! Went to docs to get antibiotics just in case I think they are getting worse/infected, as I dont want to risk coming off the chemo (Cape) as for the moment it seems to be working for me, despite all the aggro that comes with it!! I have this week off (sooo happy to get a break from it!) and need to start again Wednesday next week. I will be starting round 12 next Wednesday... MRI to spine next Friday...
By the way, you are doing just great!! NED is a VERY good place to be, and Cape seems to work well for a lot of women on this site, so I am very confident it will work for you too. You are still working full time -that is fantastic!!! I really miss my work, but at the moment I just couldnt cope with the demands, it is a full on, high pressure job with lots of deadlines-it would be way too stressful!! My work have been amazing though.
My oncologist has told me they have an arsenal of different treatments to use, so when one stops working, it is not the end of the world by any means-you just switch until they find something else that works as well. They can even take you back to cape after a long break from it, as the cancer forgets how to resist it, and for many women it starts working again years later!
So in a nutshell, GO YOU!!! Hope you feel better tomorrow -Christmas is coming-a time to spend with our loved ones, I cant tell you how much sweeter and more precious this time with my family and friends is now.
I am off to a conference tomorrow about Living with Secondary Breast cancer and I think that will be really helpful-to meet other women in the same situation, anc get help and advice about how to manage better this disease, and the drug side effects!!
Take care, stay warm, lots of love
Hi, this is the first time i have posted...hope no one minds me joing in. I am on cycle 6 of cap and have a ct scan on Monday. I was dx March 2013 aged 34 and had a mastectomy and ANC, 3 lots of FEC and 3 docetaxal, 30 sessions of radiotherapy and thought i was done with treatment for a while then I had a regional recurrence in June this year and had the lymph node removed so started cap with no evidence of disease. Fingers crossed next weeks scan shows the same. I have found cap ok....as a few of you have mentioned i can't stand coffee and i am so tired. It was reassuring to read people saying the same thing i am still working full time and most evenings i am in bed by 9pm. I have suffered with sore hands and feet but have very painful toenails and hadn't assocaited this with the cap. Other than that i have what seems to be the usual stuff....a bit of nausea and i have diarrohea very often. The tips on here have really helped i was having a very emotional day today and reading this thread helped...thank you.
Julie, so sorry to hear Moneck has been so poorly lately! I do hope she feels better soon. It must be a really worrying time for her. I'm mentally sending her my best wishes. Barton.x
Hello Cap girls, I don't normally post on this thread but just wanted to let you know that Moneck has been quiet because she is in hospital. She has been in for a couple of weeks now, she had to have an op for a blocked small bowel, I think. Now her stitches are leaking and they think that's more likely to be down to her mets so she is leaving the surgical ward and going onto oncology ward. Not sure how long she'll be in but thought you'd like to know.
All the best to you all, Julie xx
That has reassured me if you getting pain there and not even got liver mets!! nd ni, I dont think you have anything else going on at all!!
Yes, ever since been on them, get phases where I feel really bloated and full, and have pain twinges there. I have talked myself into believing that it could be the Cape tablets actually working on the tumours themselves and this causing the liver to react rather than anything ominous!!
Hi Mowser. I started getting pains in my right side sincer taking Cape, it flares up at night and gets better in the day when moving aroiund. I did not have any liver mets at my last scan in September, only in my bones, so I don't know now if this pain is caused by the tablets or something developing in my liver. I note you have taken them since March. Have you suffered pains and side effects all this time.
Although I have some loss in appetite and taste changes, I do not suffer from bloating and breathlessness.
Hoping that things will soon get better for you.
All the best
Thanks Barton for clearing that up. I might ask about mine it is not something I am told automatically.
I have been on Cape since March now-on 11 th cycle I think. Have liver and bone mets, diagnosed in March. Have been reading about all the side effects you are experiencing and can completely relate.
One thing I wanted to ask-do you still get liver pain and a very bloated abdomen when taking it? I always worry this is my liver mets kicking off again, as when I was first diagnosed this is how it felt, I was so so bloated and felt breathless and unable to eat a complete meal without feeling really uncomfortable.
Just wanted to know if youexperience a bloated stomach and feeling of fullness too?
Hello again. I thoiught I would see what had been happening on the thread, which I joined a couple of weeks ago whan I started my treatment. It is great to share other peoples' experiences. What really surprises me is how different our experiences are.
I have now had 2 cycles and going to start the 3rd tomorrow. I have found it quite tough, feeling nauseous much of the time, my hair has stopped growing, I am getting pains in my side, possibly liver, and my hand and feet are a red and sore. And I cannoit stand anything sweet! I am going to have a word with my the nurse tomorrow to see if it is still OK to carry on with this dose. I have one more cycle before my scan on December 22nd to see if it has worked. So I just focussing on getting through this, and then see what comes next. I noted that someone mentioned taking it for 1 week and then 1 week off, that may be a better option if you have to carry on with it.
I think the trouble is to keep positive whan you are not feeling terribly well.
Someone (sorry cannot remember the names of you all) mentioned a TM count. I am sorry to be so ignorant, but I have no idea what this is.
All the best
Hello, Helen - so glad you are feeling better now you have finished your antibiotics. I know they can sometimes make you feel ill, too.
Katherine - do hope you are feeling better now. Hope you contacted your chemo nurse in the end and got some real help!
Best wishes to everyone else, and hoping the SE's are mild to non-existant for everyone! (dream on, I know). Hugs to everyone, Barton.x
Thank you, everyone for all your best wishes - yes, really pleased now I have had time to get over not having "official" results. At least he promised me he would write when he got them. Helen, glad you are feeling slightly better - just remember what other people have said, and think of it as the bone lesions healing (not as easy as it sounds, I know!). Katherine, hope you are feeling a bit better now - you've really been put through the mill, haven't you? I'm still thinking of you and wishing you all the best. Hope everyone else is feeling OK-ish. Hands and feet hopefully healing. Sorry, can't remember who asked, but yes, I seem to have worse se's on week off, and as someone else said, it's the Cap at its height - do you feel slightly better the first 2 or 3 days of the next cycle? I do, sometimes. Hugs and best wishes to all Cappers, from a still itchy Barton.x
Thanks so much, Helen. Yes, really pleased, but will feel better when I get the full written report. Shouldn't look a gift horse, etc., though! Are you feeling better now? Have you got your pain under control now? I do hope so. Hugs, Barton.x