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tomboy81
Member
since
30-05-2014
73
Posts
26
Hugs
13-05-2016
08:19
Hi EJ81. I'm pretty new to the group too (I've been on cape for just over a week) Sending a big hug to my cape newbie sister! I think we must be the same age too judging by the "81" (I'm 35) Thanks to everyone for the tips- keep em' coming! I have liver Mets and have been getting twinges in that area over the past few days. I hope that means that the peachy warriors are doing the trick! Happy Friday X
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13-05-2016
02:39
Hi Marirose. I'm with you on the sore hands and feet! I'm also very grumpy despite the sunshine... I've been on cape for just over a week now and the soles of my feet are really painful! I've been telling people at work that I slipped down the stairs because I'm hobbling around like an invalid! I've been moisturising my feet a lot and trying to keep them cool but is there anything else I could do? Top tips welcome....
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04-05-2016
09:26
Thanks Marirose. I'm really grateful for all of your support through such a frightening time xxx
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04-05-2016
07:30
Thanks Barton. I found your post really comforting. It's good to know that working whilst on cape is doable and that people have managed many years on this treatment. I start tomorrow and will keep you posted on my progress. I hope the peachy warriors will do their trick for me!
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04-05-2016
04:00
Hi ladies. Mind if I join you on here? Scan results today showed a "significant change" in my liver (backed up by blood test results) Strangely bones are improving!? Starting cape on Thursday after burning through tamoxifen, anastrazole and e/e in the space of 17 months! Sadly none of the hormonals seem to have worked for me. I'm really scared about the future (hence posting at crazy o'clock!) Despite continual bad news I feel physically well and continue to work full time. To add to my worries I'm meant to be taking up a position with my company in Central Europe in 3 weeks time (I'll be given a private GP over there but healthcare remains directed by my London hospital) I'll be flying back regularly for scans, appointments etc. Now I'm wondering if I should continue with my plans- will I be able to manage this on the new meds or will a change give me a focus away from bl**dy cancer? I'm just so worried about everything right now. If only I could get a decent night's sleep which might put some perspective on things... Bah! Lots of love to you all xxx
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18-01-2016
10:16
Hi scousegirl. I also had my surgery done at the Royal Free. I was referred there from UCLH as it is a specialist liver hospital. I have 3 relatively small bone mets. Hope this helps! Tomboy x
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14-01-2016
07:00
Is anyone on e/e and having NO side effects at all? I've been on the full 10mg dose for almost a fortnight now and nothing! I'd prepared myself for mouth ulcers, nausea and rashes from the "demon drug" but no sign of anything. I'm kind of worried it's not working... Any thoughts? X
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05-01-2016
08:33
1 Hug
Thanks for all of your comments ladies *blushes* Less inspirational, more nutter I think! I'll keep you posted as to how things go...
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04-01-2016
05:12
2 Hugs
Hi Samantha. I wish I could be more like you and live in the moment! It's so good when you can take pleasure in each day and look forward to nice things every month. Sadly, I'm a bit of an obsessive planner which is very frustrating when dealing with this annoyingly unpredictable condition! Bah. Maybe I need to take more Mindfulness lessons or something... Anyway, my job offer is a 3 year project in the USA. I spent the whole of last year working hard for this and beat off quite a lot of competition. However, the fact it's America has brought a whole host of medical insurance problems my way! My company are massively supportive and want me to go but red tape may mean it won't happen anyway. My medication will be shipped out to me and I'll have to fly back for scans. Onc is happy to do telephone consultations. Part of me thinks, if I haven't got long left I may as well enjoy it (I'm in my 30's and feel fit and well) However the sensible part of me says "put your health first and stay close to your hospital!" After much agonising I've decided (perhaps stupidly) to pursue the dream. I want to LIVE with cancer and not let it dictate me. I'm not sure if I'll be able to pull this off but I'm going to give it a blummin' good go! Feel free to jump in and tell me I'm crazy at any point by the way... Sanity checks welcome!
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02-01-2016
11:34
1 Hug
p.s Sorry Jacksy- I just got into a bit of a self centred rant there! I forgot to say, I hope you get that elusive biopsy appointment sorted. Also, we're definitely not nasty old cows so we shouldn't let this ****** disease make us bitter and twisted. Let's resolve to snap out of it together. That way we can stick two fingers up at it! Like swans, we will be calm and rise above it 😀
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02-01-2016
11:21
1 Hug
Hi Jacksy- I totally sympathise! I'm in a new year grump too! I had a liver resection back in September to remove a solitary liver met. During scan results a few days ago I found out I have TWO shiny new liver mets (argh!) plus 2 new boney bits to add to the mix. As such, I'll be starting my 2016 on the so called "demon drug" combo e/e. Brilliant. Hello horrible side effects! This has come at the worst possible time for me too. I was literally about to pack up my life and go and work abroad for the next 3 years. Although onc hasn't ruled it out (I'm 34 and feel entirely asymptomatic of cancer) he definitely doesn't want me going anywhere for the next 2 months. I'm in a massive quandary now- should I ask for a delayed start to the job? Or should I be sensible and stay in the UK and put my health first? I look at all my mates who have plans for the future and it seems so easy for them. Whereas my life is constantly dictated by sh***y cancer!!!! Bah. Rant over. Anyway- I'm totally with you on this Jacksy! Any other "new year grumps" out there???
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30-12-2015
07:31
Hi everyone. Thanks for taking the time to reply to me. I've had a really "down in the dumps" day today. I guess I naively thought I'd get years out of anastrazole. Instead I've burnt through this and tamoxifen within a year. I didn't expect to be ticking off the treatments so quickly. Really scared for the future as I'm entirely asymptomatic and feeling really well right now. As for HER2 status I've been banging this drum with my onc for months! The hospital where I had the liver resection done analysed my tissue and the results came back "inconclusive" My own hospital did their own test but it seems to have got lost within the computer system (argh!) They don't seem to be in a hurry to chase this up as they're convinced I'll still be HER2 negative. However I'll keep persisting! It would certainly explain why the hormonals aren't working despite being 6/8 ER+ and 3/8 PR+!
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30-12-2015
11:58
Hi Marirose. I'm due to start on e/e in 9 days time after scan results yesterday showed progression (I've previously been on tamoxifen and anastrazole) Having read this thread I feel pretty well versed on the SE's so off down the shops today to buy baby toothbrush, toothpaste and mouthwash! Just wanted to ask if you're still on this and how long it has worked for you? I've always had progression and desperate to get some stability! Are you on the full 10mg dose or have you had to cut down? I'd be really grateful to hear others' experiences. Thanks! X
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30-12-2015
11:48
So sad to hear this. She was always so kind and knowledgeable. She gave newbies like me great advice and hope for long term survival. What an amazing lady X
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29-12-2015
06:39
2 Hugs
*waves to Janette* Thanks for your kind words xxx
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29-12-2015
06:38
2 Hugs
Hi all. Not good news. After enduring a liver resection back in September to remove a solitary liver met I now have 2 liver mets. I also have 2 new bone mets to add to my existing 3. After non-effective tamoxifen it seems anastrazole is also doing nothing! Onc wants to keep cape in the back pocket for now and try me on the e/e combo (especially before the NICE review in April!) Job abroad is definitely off the cards for now. One word- gutted.
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29-12-2015
02:02
Thanks Marie. Friends and family are great but it's only ladies like you who know what this truly feels like! Hope you're getting on OK too. Oodles of Love back! xxx
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29-12-2015
10:41
1 Hug
Hi Marie. I have scan results today and expecting to hear the same as you. I was given a CT scan in error a couple of months ago which showed "possible deterioration" Getting the results from a PET scan today (the one I should have had in the first place!) Just hoping my major organs are clear- I had a liver resection back in September to remove solitary 2.5cm met. So much is riding on this today. Hoping to take up a job abroad but if my results are rubbish my dreams could be going down the toilet... Good luck to anyone else sweating in a waiting room like me today! X
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11-11-2015
06:12
Oh, and I still have six monthly scans too! All the best X
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11-11-2015
06:10
Hi Stelwah. I wasn't sure if I was having keyhole either! My surgeon said he wouldn't know until I was on the operating table if he could do it or not. It was a pleasant suprise when I woke up! Absolutely no problems at all since- to be honest it's like it never happened. One of my "holes" was a bit leaky and took longer to heal up than the others but that was about it! I'm still having monthly zoladex injections and taking anastrazole (I'm ER+) and as I have a couple of small bone mets I'm on denosumab and adcal supplements. Good luck with the op- you'll be absolutely fine. Tomboy X
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