Hello Cashmore
So sorry to hear about your mum. Things seemed to have happened very quickly for you. I too lost a parent to cancer so understand how devastated you must feel. Sending you lots of hugs
George
Hi Tournesol, as you say, steroids often can cause swelling.
You have only just started your treatment, so dont worry about dvts too much, but just get your legs checked asap when you can, if you are concerned.
I dont think they will offer blood thinners unless they were concerned about a dvt.
I only wanted to mention mobility…no need to run marathons(lol) but I just have a little 5 min walk round the house every hour or so, or as you said a short walk out when I feel like it.
When im sitting, its good to put my feet on a stool, raise my leg level above my btm, when I can, if my lower legs are swollen.
moijanxx
Hi Tournesol
Having only been on Cape for 2 1/2 weeks, I don’t pretend to be an expert; however, I have found it pretty manageable so far. I do feel more tired and have had the odd dodgy tummy, but nothing really major. I do hope it continues like this and, more importantly, that it works. My oncologist also said that it is fine if he has to reduce my dose as lower doses are just as effective. I have been taking an anti sickness tablet first thing, moisturising my hands and feet regularly and trying to pace myself throughout the day-all tips I picked up on this site. 
George
Hi Waffles/Barton and Moijan
Thanks for your good wishes regarding my ultra scan results. News was better than I expected as scan showed no increase in size. Bizarrely, the ultra scan only picked up 2 lesions whereas the CT scan picked up 3. Anyway, it was just a relief that the lesions had not increased in size. Tumour markers had also fallen which is good news. All this seems the result of Tamoxifen which I was on for a few weeks before liver lesions were diagnosed so it seems like it was effective. Just hope Cape is effective too.
Have a good weekend all, despite rainy weather
George
Thanks Waffles/Barton, results were definitely better than I expected but, you know what it is like, the anxiety never leaves you. Will find out if Cape working at end Sept/beginning Oct although blood test in 3 weeks might give some indication. There is always something to worry about, especially as CA15.3 result always takes a good 2 weeks to arrive so results are retrospective. Onc did want me to stay on Tamoxifen a little longer before I started Cape but I didn’t know it was working then so wanted to start chemo as felt it would be a more aggressive treatment. Anyway, have a booked a holiday to celebrate -we are off to Bristol for the bank holiday weekend and then driving down to St Austell for 6 days so hoping the weather is good. You know what the English weather is like!
Enjoy the rest of the weekend
George
Thank you all for all your support x
Hi George,
My hospital doesn’t do tumour marker tests which I’m kind of glad about as it would just be another thing for me to worry about. I get bone profile blood tests and liver/ kidney function and full blood count done before every hospital appointment which I think most hospitals do.
I must admit I would have started Cape too in your situation rather than stay on tamoxifen.
Have a lovely, stress free holiday. Best wishes xxx
Hi Waffles
I know, TM results are so stressful. My Onc even has a graph which he shows me so I get a visual representation. Great when they are going down, not so good when they go up. If you don’t mind me asking, please say if you do, where are your mets? Yes, I am looking forward to going away, especially as I am sitting in living room at this moment watching the rain. 
. Sure there will be blue skies in the morning, ever the optimist.
Have a good evening
George
Hi George,
My mets are in my pelvis, hip,spine and liver. My last scan showed my liver mets getting smaller and my bone mets stable. I have another CT scan coming up soon so not really looking forward to all the stressing out that comes with that. Best wishes xxx
Hi George
Good news about results but as Nicky has explained it quite well the TM are not always conclusive as two of my onc’s have said CT scans show better results. I hope you get the chance to get away.
Scan time coming up for me Thursday results next Wednesday so fingers crossed it will be ok. My hands are back to normal after the three week break so I am able to do more now the sensations have come back I am almost at the end of my second week of tablets and then the free week. Then cycle 13 if scan is ok.
Love and ((((hugs)))) to all capes and friends xxx
Hi Waffles, Marirose, Nicky
Thanks for your advice and support. My oncologist said he doesn’t refer to TMs with all his patients, but mine have bee pretty reliable in showing whether treatment is working. When I was on Exemestane, they went up and CT scan showed some progression in bones; they went down while on Taxol for about 10 months and then started to rise when CT scan showed progression to liver so that is why I am always anxious about the results. Next lot in 3 weeks and I doubt Cape will have had a chance to do much. It is frustrating that they are always 3 weeks behind. Oh well.
Good luck with your scans Marirose and Waffles. What hospital do you go to, Marirose? They are very quick at giving you your results. I usually have to wait longer than a week.
Last day off today tomorrow before I start cycle 2 on Weds. Had a really dodgy tummy during week off which surprised me as I thought things would have settled.
Looking forward to holiday in Cornwall next week even though I will have to pack my peachy friends :-)
Have a good week all
George x
Hi George
I am at Doncaster but the oncologists work from Sheffield Western Park. Sometimes I have to go to Worksop for scans. The reason the results will be quick is because I see the onc next Wednesday for my 13th cycle
I have found the cape continues to work even on my free weeks the bowels act up from being constipated they change to the runs not too bad though I haven’t resorted to the tablets yet but they are there if I need them.Free week starting tomorrow.
Enjoy your holiday George I do hope that the weather stays nice for you. I think we will try to get away in the caravan when we get a break from all the appointments.
Love to all ((((hugs)))) xxx
Hi all
Thanks for sharing. It sounds like there is no escape from dodgy tummy while on chemo. Immodium is my new best friend again. Enjoying a glass of red wine before I start cycle 2 tomorrow (probably shouldn’t) . Hope you all got to enjoy the sunshine today and that it continues.
George x
The pattern you describe sounds very.much like that i am experiencing. Enjoy your free week, Marirose, just finished mine. Hope you get to your caravan. Really looking forward to Cornwall.
Hi ladies,
me again. Hope you do not mind if I have a little rant, but to cut a long rant short, I am feeling a little annoyed about an email I received from my BCN. Basically, as my onc is on leave for my next review in 3 weeks, he suggested I should get my CA15.3 result from her. I sent a polite email asking if this would be possible and suggested a date when I am in the hospital, but made it clear I could come in any time to suit her and a ten minute meeting would be fine. Even though she had been in the room 5 weeks ago when my onc told me I had progression to the liver, I found her response very cold. In her email, she said I could come up to the ward on the date I suggested but she had a clinic and could only see me for a few minutes. No time was suggested or enquiry about my health.
I did send a curt email back asking for a time and was told come between 10. -12. She signed off with just her name. Sorry to ramble on, but I felt quite upset by her tone, especially as she had been present when my onc had given me the news and seen how devastated I was. I do intend to make my feelings clear when I see her next month. Although I have been at the hospital for nearly a year, I have only had 2 meetings with her, both of which I instigated so it is not as if I am constantly bothering her. Am I over reacting?
Rant over. On a positive note, I had a lovely day with my nephew today
George
Thanks, Barton. Sometimes I think it is just me being sensitive. Have felt quite disappointed by lack of BCN support really. Am changing hospitals next month so hope things will be better.
Yes, despite rain had lovely day out with nephew in Birmingham. Looking forward to Cornwall ?
Hi George,
I agree with you George, surely a 10 minute meeting wouldn’t be impossible for her to fit in somewhere in her schedule.
Glad you had a nice time with your nephew. Have a lovely holiday. xxx
Hi George, I agree that we should be offered more support from BCNs and others.Hope you are able to put your views across.
Could people share how much anti diarrhoea medication worked for them while on Cape? I took one tablet earlier but it seemed to have no effect. Have been told to call nurse every time I want to go to the loo (I am in hospice) and feeling paranoid! As already have bowel problems from the spinal cord compression & with diarrhoea don’t really have a sense of when I need to go.
Tournesol x
Hi Tournesol, fairly new to Cape as only on second cycle, but I found I had to take 2 Immodium when I had a dodgy tummy. That seemed to work for the day. Hope.you are feeling more comfortable
George
Thanks George. I think they want to monitor me overnight before giving any more pills. But hopefully we can bring it under control tomorrow. This is miserable and only start of week 2 of first cycle. Tournesol x