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Glo
Member
since
01-05-2012
147
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5
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27-05-2016
03:51
Hi Carolyn, mri showed further mets so steriotactic radiotherapy out, just finished 10 wbrt, all ok, just waiting for it to show some effect! Feel fine apart from being totally exhausted! Just as well I like a good sleep 💐 💤 💤 💤
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20-04-2016
09:21
1 Hug
Hi Verity, Sorry you have had to join us! I was diagnosed in Sept 2010 with secondaries from the start- multiple lung mets. I was given letrozole which I took for 4 years and they completely disappeared! Things have changed a lot since then (that's for another time!) I also got a pleural effusion in sept 2015 which I had drained and then had a pleurodesis which prevented any reoccurrence! There are lots of treatments available! Good luck with your treatment Glo xx
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14-04-2016
10:29
Thanks for the kind thoughts and support everyone! Had 2nd Erubilin yesterday, chemo 2 day 1, no effects apart from tiredness today, working out tired/good days! The Erubilin is for a slight progression in liver. My main issue is really poor mobility ATM, hard to deal with after 3 ski holidays last year! Mri scan eventfully came thru for this Saturday, my unit are really cross it's taken so long and my Onc had complained!! Hopefully will get results and treatment sorted quickly, and mobility will improve! Despite me saying you shouldn't have to pay for things we have had a reconditioned stair lift fitted so. I can get up them!!! I think you can get them from council but time was the issue! Luckily we can afford it! Off for some retail therapy later in my chariot!! Glo xxx
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14-04-2016
12:24
Hi Carolyn, Surely you shouldn't have had to pay for these adaptations? I have recently lost a lot of mobility (hopefully it's temporary due to a couple of spots in brain and radiotherapy will help!) but occupational health have provided me with frames for the loo, a shower stool, chair for sink, crutches, walking frame, wheelchair, would have put in an extra banister had I wanted and anything else I needed! Very good service! You shouldn't be out of pocket on top of pocket on top of everything else! Glo xx
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08-04-2016
04:30
I still haven't had an app for mri, which is very unusual for my hospital as they are usually very quick with everything! Have spoken to Onc unit today who are going to chase it up! A head scan was done because I became very weak in legs, numbness/pins and needles in left leg, right foot and hand! Over the last 3 weeks it has gradually got worse to the point I'm now using crutches and a wheelchair!!! I feel ok from the chemo though apart from tiredness! I did speak to a friend of a friend etc.. Who had exactly the same and once she had the radiotherapy is was sorted! Just getting very frustrated as this time last year I had had 3 ski trips!!! Glo xx
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31-03-2016
04:32
That'll really be "getting my monies worth out of the nhs" not bus!' Predictive tex- opps! Ha ha!
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31-03-2016
04:30
1 Hug
I'm sure the odd gin won't hurt! A little bit of what you fancy! Need treats! I'm 62 and never took any medication until this, now I rattle! Getting my monies worth out of the bus for sure! I have to say where I live and am treated the service has been absolutely fantastic!!! Hugs to all Glo xxx
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31-03-2016
02:54
I have tried drinking a couple of glasses of tonic water a day, which seems to help, it's the quinine that does it! It also seems to settle the stomach! Glo xx
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31-03-2016
10:06
3 Hugs
Hi Julie, sorry you've had this news! My story quickly! Diagnosised 2010 sec from start (lungs), 4 years letrozole, worked very well, progression sept 2014 to liver, given e/e, didn't work, March 2015, further progression, cape, didn't work for me (wrecked my stomach!) but it does work for many! Further progression, onto paclitaxel for 12 which worked very well! Finished that last Aug, no progression until just now so new regime just started! Personally I would choose the cape to try, as in tablet form, less SE, avoids the IV chemo, and if it works much more convenient! What does you're Onc prefer? Good luck in your choice and be reassured there are loads of options around, I've been in treatment for sec for nearly 6 years, with nearly 5 of those relatively easy, just the last 3/4 months I'm struggling as now in lung, bones ( but both those stable) liver (slight progression) and now two spots in head!!! But I'm still here, living with it and intend to do so for much longer!!!! Glo xxx
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31-03-2016
09:52
I had 12 weeks chemo last year, didn't loose eyelashes/eyebrows until about a month after it finished! Eyebrows came back very quickly but then they at easy to draw in! With eyelashes I used a serum (xlash? From Amazon) and had Stubbs within a few weeks and could use mascara within a month! I did have the cold cap during chemo which worked and may have helped! Not sure if diff chemistry make any diff! I'm now on erubilin, just had day1/8 so waiting to see what happens with this one! Hope that helps! Glo xxx
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28-03-2016
06:47
I read somewhere that Vaseline is not good for up nose cos it has fibres in it which can get into lungs!
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28-03-2016
05:13
Hi Julie, Sorry you're struggling, not at all nice! I know the feeling!! As regards the nose, ask your gp for some naseptin (sp) it's a cream you put up nostril and really helps with dry, bloody bits (nice!!!). I've used it very successfully! For food have you tried plain boiled rice or mashed pot? Not very appetising but at least it's good! Good luck Glo xxx
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27-03-2016
04:13
I too have just started this treatment! Finished paclitaxol last summer, good response, 6 months on tamoxifen, further reduction but some slight progression in liver shown (lungs, and bones stable!) last week. I have also been extremely fatigued and numbness down left leg and muscle weakness and two spots have been found in brain! Awaiting an Mri scan to confirm to see if I can have stereotactic radiotherapy for that! Was diagnosised with secondaries from start in sept 2010 and had a very good run with letrozole for 4 years!! Cape did nothing for me either apart from wreck my stomach! Glad Erubilin in doable! Hopefully will work!
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26-03-2016
03:23
I ended up with a pe during my last chemo, so had 6 months of daily tinzaparin injections into stomach (self administered). Was put on tamoxifen (risks of clots) and am now back on chemo, I am now high risk for further clots so will be on permanent anti coagulants. After the recommended 6 months of injection I now take tablets, rivaroxiban. The problem with warfarin is you need weekly finger prick monitoring and it can be affected by what you eat! It also stays in your system for about 72 hours so if you need any procedures it can be a problem. Tinzaparin and rivaroxiban only stay in system for about 18 hours, so when I had a lung procedure I just stopped it for a day! Good luck with your choice and feel free to ask me anything! Glo xxxx
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13-03-2016
05:02
Instead of plasters have you tried thin cotton gloves, available on Amazon? Can also get socks as well! Obviously re-usable. Glo xx
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09-03-2016
04:20
Thanks! I'm preparing myself for chemo, only had 1 lot (taxol for 12 weeks) since diagnosis 5.5 years ago. In the words of Roy Cropper on Corrie " being negative doesn't change the outcome but makes you feel worse along the way!" Glo xx
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09-03-2016
01:02
I had stopped taking painkillers by the time I left hospital. Hopefully things will improve and your consultant will have the answers for you! It's good you've been able to have biopsies done at the same time, I too had this which confirmed I was still ER+ but HER2 neg. Im pretty sure I'm having profession ATM as tumour markers are up and I'm exhausted, just waiting for a scan appt and then prob more chemo! Yuk! Glo xx
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09-03-2016
11:12
Hi Ann, glad you've had your surgery and it seems to have been a success! I seem to remember after mine last Nov my breathing returned to normal straight away. They did check the re-inflation of the lung with several X-Ray's before discharge. I was tired as a result of 6 days in hospital but no after effects. Hopefully your breathing will improve soon. Glo xx
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04-03-2016
03:09
That's great news! Letrozole completely cleared my lung mets after 18 months and worked for 4 years! Things have changed in the last year but I got 4 years with no SE, no symptoms! Hopefully the same for you Glo xxx
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