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lizcat
Member
since
01-05-2012
1304
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3
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13-06-2014
08:09
Well, I'm off the faslodex already. It seemed to give me stiffness, aches etc and reduce mobility. Had an urgent scan and there are more deposits all down my spine which aren't helping. Oncologists are on the ball though and immediately booked me in for rads planning next Tues. They will look at areas needing attention and which bits have been done before and take it from there. After that, it will be another look at hormone therapy or possibly chemo if I am fit enough. Bit of a set back but have to get on with it and hope there will be some gradual improvement! Liz
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03-06-2014
06:15
That's the position I'm in although EE worked for about 10 months after over 4 years on arimidex. They will monitor with scans. Had 2 doses of faslodex so far with next one due next week when I have clinic appointment at same time so early days. Liz
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28-05-2014
07:49
Not posted on here for ages but just to say I echo everything Julie has written. I have had bone mets for 7 years, same time as primary, and have really managed ok until I had spinal compression in Feb when a vertebrae collapsed the wrong way. The good news is I have managed to avoid chemo again for the time being, had4+ years on zometa and 18 months on denosumab. Had a couple of hormonal with the latest being faslodex which I started 2 weeks ago. Also have zoladex, made pain free by the use of emla cream! Good luck with all the drugs, girls. Liz
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19-05-2014
08:16
Thanks for that - good to hear. My joints and body have been achy and stiff this week but that may be due to the spinal surgery as well. Seem to be very tired too but know that is a common side effect. Second dose next week and am sure my body will get used to it. Main thing is that it works!
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12-05-2014
07:34
First dose done! All went ok apart from having to wait for the drug to come from pharmacy for over an hour. I put emla cream in the area but was a bit out of line with it so will know better next time. At least with me having numbness and tingling from spinal cord compression may have helped with the lack of pain! Nurses were brill as ever and administered it slowly then I had denosumab. Feeling ok so far. Liz
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06-05-2014
02:48
Just typed and lost reply! Get yourself a Ninja blender/juicer from QVC, the shopping channel. They are brilliant for blending, mixing and chopping all sorts and are less than £30 delivered. You can put the peel from the fruit in and use whatever you fancy, is in season or at a reduced price. Very quick to do. As I am immobile at the mo after an op, my OH makes me juice flavours and I am easily amused guessing what is in them. Quite often it's banana, apple, pear, strawberry type of mix. I think it helps my bowels too as some roughage gets minced up too, although you can't taste anything like peel. Literally only take 2 mins to make a juice or you can add yoghurt, milk etc to make it more smoothie. If you give up on juice, the machine can be used for cake mixture! Liz
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01-05-2014
05:02
I'm due to start this on May 12th after exemestane/everolimus stopped working and I had spinal decompression surgery. Will be interesting to compare notes.... Liz
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15-03-2014
02:06
Hi, I am in Morecambe. Currently homebound for the most part after spinal op at Preston to relieve compression. Going to be a slow recovery but I will be out and about again in due course. Have bone mets. Liz
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25-01-2014
05:42
Sorry you've been turned down but definitely appeal. I didn't know I may be eligible until about 3 years after diagnosis when someone on here told me to go for it. I had retired from work on ill-health grounds and had a company pension by then. Rang Macmillan and they said I probably wouldn't be eligible and never offered any help. Anyway, I decided to apply myself and went to see one of the GPS at our surgery for a prescription and casually mentioned the form and special rules element. He said it would be no problem and indeed it all came through in a couple of weeks. That was 3 years ago and I recently had a new form to complete. That was ok, too. Rumour has it they turn down the vast majority of initial applications and make people appeal. Allegedly. All down to money but it so often seems the wrong folk are hit most. Good luck with it all. Liz
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24-01-2014
08:25
Hi. The thread on here is in the treatment and medical section and is titled something like 'anyone n everolimus/exemestane ?'. Sorry no idea how to link it - computer illiterate !! At the moment, I am not on hormonals but in the past I had tamoxifen for a few months but then had 4 years on arimidex as side effects of tamoxifen were awful. When I had a bit of spread again, I came off arimidex and on to EE. My onc is waiting to get this rads blast done and have a word with neurosurgeon to see about my spine before deciding to try another hormone or chemo. Hope you find the other thread useful. Liz
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24-01-2014
09:09
Hi Lyndyloo, I was on the EE combo for almost a year at full strength but due to recent progression have stopped it. Initially I had lots of side effects like hormonal type spots all over face and neck (lovely), tiredness and loss of appetite. I had other health issues when I started on it which turned out to be appendicitis and needed an op. That knocked me for almost 6 months and I put side effects down to that at the time. However, now I am off the pills, I think it was them that was making me feel crap. There is a thread on treatments about EE so have a look on there as there are peoples experiences throughout their use of EE. I am just waiting now for my rads planning and blast next week for the back pain. Liz
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23-01-2014
10:38
Lucy - Mrs blue is an old hand at this (sure she won't mind me saying that!) and I have had secondaries from the start in July 07 so hope that helps you at this time. There are quite a few others on here who may be along who have had mets for longer too. Feel free to ask anything or just post your feelings - we understand! Liz
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22-01-2014
08:32
This is the worst time - waiting around. I'm having a rads blast next week and that seems ages away. Then I am waiting to see what a neurosurgeon says about another bit of my spine and then wait again to see if we have a change of hormonals or chemo. You always feel better with a plan in place!
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18-01-2014
07:04
Thanks Belinda - I remember you had those problems but so pleased you are feeling much better. I had a nerve block at that time, Dec 12, as the bone wasn't collapsing the right way so think it will be a touch of cement for the higher bone with rads to lumbar spine. Then sort the rest. May well pick your brain! Will keep updating the thread with developments. Liz x
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17-01-2014
09:23
Quick update from me. Saw onc for plan as knew I had a bit of bone spread which was confirmed by mri. Going to have a rads blast to lumbar spine area and then onc is going to speak to neurosurgeon to see what to do about my original t9 met that has got worse and is nearing the spinal cord so we need to avoid compression. Come off current hormonal - everolimus/exemestane combo - and will decide whether to try another one, probably faslodex, or chemo. At least it was what I expected and the areas of pain correspond to the deteriorating bone bits. Liz
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16-01-2014
07:58
Another coming off this combo after a year. Had some more bone spread as expected so it's either not as effective or stopped working completely. Plan of campaign now is a rads blast to lumbar spine and see what a neurosurgeon can do for t9, which is my original bone met. We will then see whether to keep with a different hormone or chemo. So not the best but by no means the worst news. I hope those of you still on the combo or starting it, do really well and it can keep the b#ggers at bay. Liz x
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15-01-2014
08:35
Hi Gill, Just to say I agree with vercors and Nicky about your queries. I was diagnosed with primaries and secondaries at the same time in July 07. Had to have chemo first and that got rid of the bone mets on my sternum. Keep visiting this thread and ask any questions!
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07-01-2014
11:37
Belinda - lovely to hear from you and that things seem to be going as well as possible. You give me hope following your progress! My back has been playing me up again recently and there appears to have been some spread in my spine so I am waiting for an mri next week and then see onc to see what to do. May be vertebraplasty or rads and probably change in hormones - after 4+ yrs on arimidex then a year on exemestane with everolimus, think the Cancer needs fooling again!! Good luck with treatment, everyone.
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22-12-2013
11:27
Well bone scan showed bit of spread in spine but ct showed things to be same as June's scan so mixed bag really. Onc not unduly concerned so getting an mri scan to see how mets are affecting spine and tissues. Then perhaps it may be vertebraplasty, rads and/or change of drugs. Staying on EE til results in. Was hoping to have plan in place for new year but that won't happen now. Hey-ho. Have as restful and comfortable festive season as possible and here's to a better 2014 all round xx
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11-12-2013
02:07
Really sorry EE has stopped working but hopefully the taxotere will blast the evils. Not had it myself. I have a feeling it may have stopped for me too as my back and hip have been giving me some grief recently. Had bone scan last week and ct today with results on 19th so we will see.... Sorry not been posting but sometimes I'm signed in and other times it won't let me! Hope you can all have as nice a festive season as possible.
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