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Bone mets - please join in

Lynnq
Member

Re: Bone mets - please join in

Hi again........i went to Disneyland last August with my daughter and 4 grand daughters. We had a brilliant time and I am sure that you will!!!!!

had my second 'stable' scan a couple of months later, and am thinking about going to Disneyworld in Florida now!!
dawnhc
Member

Re: Bone mets - please join in

Hi mileytom 🙂 you asked for positive feedback and  I hope you feel encouraged by all the great posts so far. I feel I have been living with breast cancer as a constant companion for years now!! My first diagnosis was way back in 1990 when I was 45 (I cannot believe I will be 70 at my next birthday). I had a lot of recurrences/new tumours etc. until I was diagnosed with multiple bone mets in 2002. I thought my world had come to an end thinking I had weeks, at best months to live. But since that secondary diagnosis 12 years ago the bone mets have remained relatively stable. Pain has been my major problem to cope with these last few years but hopefully that is reasonably under control  now. My breast cancer has been very much her2 positive but before herceptin was around. Everything for me became more stable once I was put on this drug and have stayed on it for 10 years now and it has meant that I have been able to stay of chemotherapy thank goodness. I have also been on bisphosphonates since 2002 (pamidronate at the beginning and more recently on zometa).

 

What about yourself - have you just been diagnosed with primary bc as well or have you had breast cancer for a while now? What about your hormonal status? Are you er/pr positive and on tamoxifen or one of the others. Mine is er/pr negative. Lastly, and I will stop asking questions 🙂 - is this going to be your first grandchild? I ask because I thought I would never have the joy of seeing our own grandchildren but in the past three years our daughter has presented us with 3 of them. A boy first and then 18mths ago one of each (twins).So I would say save those tears till that baby arrives and they will be such tears of joy. I hope you get many years to watch yours grow and develop.

 

Dawn

xxx

Lucy21
Member

Re: Bone mets - please join in

Hello Mileytom
I was diagnosed early jan 2014 with secondaries . It is still early days for me too but I took great strength from these lovely ladies on here . And those inspiring stories helped in those very dark hours after being told I had secondary breast cancer . I am starting to feel more possitive and realise that there are lots of treatments available and life can go on . Scottishlass is an inspiration to us all ! Read and re read her post when first told and have only just seen the latest .just what us newly diagnosed need to read . X
Mema23
Member

Re: Bone mets - please join in

Mileytom, have a wonderful trip to Eurodisney, don't let being scared spoil your trip. There are loads of different treatments out there and I'm sure this will be the first of many holidays you will be able to take x
Tinkerbelle
Member

Re: Bone mets - please join in

Hi JulieD,

 

I remember you too and Val from way back  Smiley Happy

 

I was quite surprised to see me here too (so was the onc), but I am pleased to be part of such

a lovely group of ladies. x

Mileytom
Member

Re: Bone mets - please join in

We are all going to euro disney on the 5 th march been looking forward to it since before christmas booked it for a surprise for our daughter and son in law and my son daughter in law and our beautiful little 2 year old granddaughter feel scared of going at the moment because of the way I feel just won't to be strong thank you ladies xxx
Mileytom
Member

Re: Bone mets - please join in

Thank you so much all you lovely ladies xxx
Julesie
Member

Re: Bone mets - please join in

'Several' not severely!!
Julesie
Member

Re: Bone mets - please join in

Hi Mileytom

I was diagnosed with bone mets in November 2011. Since then I've done severely long haul trips, had 6 skiing holidays and play golf regularly. It's absolutely devastating when you first get diagnosed and you can't imagine how life will go on. BUT, it does. There are so many different treatments that can give you long periods of stability. it's important to try to live for the moment though and this does take a while to get used to. You will have dark days but as Lynn said, read the celebrate thread as this will hopefully show that life (and good quality life!) can go on. Xx
Mileytom
Member

Re: Bone mets - please join in

Thank you for replying started radio yesterday for five days and start chemo on the 7 th march, just can't get my head around everything ,thank you Tink for such a lovey post xxx
JulieD
Community Champion

Re: Bone mets - please join in

Tinkerbelle hello, I remember you from Claredrops days and am so sorry to see you've now had to join this group. That was a very good quote to put up from Scottishlass, she is a great inspiration to us all.(Waving to Val)

Mileytom, I'm so sorry you have joined us and I can feel your despair. We know what you are going through so do keep comung back. Everything will look very bleak and be very scary for you at the moment but it does get easier and when you are treatment you feel a little more in control. I was dx with my primary in 1999 and was just allowing myself to believe I'd 'beaten it' when I was dx with bone mets in 2010. I have mets in spine ribs sacrum etc....However I'm coming up to my 4th anniversary and am doing ok. I have zometa every 4 weeks and am on letrozole. I do get pain but that is controlled by medications and when necessary radiotherapy. There are lots of us boney ladies who have been living with the disease for tears. Scottishlass about15, Dawn in double figures, Nicky about 10 I think......so take some comfort and hope from this.

Hope all my other friends on here are doing ok and surviving the weather!

Chris007
Member

Re: Bone mets - please join in

Hi Mileytom - I am so sorry to hear your news but thought I would share my story. I was diagnosed with multiple bone mets in July last year which spread to my liver by December. I am now on Capecitabine (oral chemo) with very few side effects. My last scan showed things improving so will continue on meds - on denosamab for bones. I am a busy single mum of 2, still working, running 6 miles twice a week and have signed up for the full 26mile Moon Walk (in a mad moment). Life goes on and WILL get better - there are a load of treatments out there and so many good people willing to support us. I am enjoying reflexology and pilates. Off to Scotland on sunday with my 10 year old to enjoy the snow and do some horse riding.

I wish you well and lots of love. Chris x

2catlady
Member

Re: Bone mets - please join in

Hi,mileytom,so sorry you are joining us,but you will receive lots of help ,support & advice from the ladies on this site.
We all know what and how you are feeling. There's also a lovely lady on here called Belinda who has had mets for over 10 years too.
There is always someone on here to help,talk or reassure. Please don't ever feel alone.
Huge hug,Helen xxxxxxx
Lynnq
Member

Re: Bone mets - please join in

Hi mileytom. We know how you feel and you will start to feel better. I remember how terrible I felt but there are so many inspirational stories on here. Read the 'Celebrate' thread.
I was diagnosed 14 months ago, secondaries confirmed 6 weeks later......put on Letrozole and have been stable since.........
Tinkerbelle
Member

Re: Bone mets - please join in

Hi Mileytom,

 

I'm so sorry you have found youself here.

 

I'm recently (Jan.2014) diagnosed too and I vividly remember how I felt and how dark everything seemed but it does get a little easier as time goes on.

 

I'm sure many of the wonderful ladies on this board will be along to offer their support but in

the meantime I remember reading a post by Scottishlass which I hope she won't mind me posting here.

It kept me going during the dark hours:

 

A Happy New Year everyone. Sorry I have not been on here much but am hoping that I will get back into the routine and visit the site more often.

I know many of you on here so hello to you all, and a warm welcome to all the ladies I do not know yet. 

I have been dealing with bone mets for a lone time now. I first had BC when I was 39 and continued to work for 10 years when I found that I had extensive bone mets in 1999. I have been having all sorts of treatments over the last 15 years but am having a break from chemo just now. 

Just wanted to let you new ladies know that there are long term survivors out there with Bone Mets. 

Will look in here again soon and see how you are all doing. Feel free to ask any questions. Love Scottishlass.

 

 

Take heart - there is still light.

 

Tink x

Mileytom
Member

Re: Bone mets - please join in

Hi I'm new here only found out on Tuesday that I have bone mets to my sturnum and sacrum just feel has though I'm going to die any one help need positive feed back just can't stop crying , my daughter is due a baby in July keep thinking I won't be there for her xxxx
Porkie
Member

Re: Bone mets - please join in

Hi Nicky. Yes when I was originally diagnosed with double whammy in bones in April 2011 the cancer was mainly hormone positive but there was 5% HER 2 so the oncologost was always aware of this. Luckily having enlarged lymph nodes in neck enabled a biopsy which showed less hormone positive and new cells were HER2 positive so the receptor status has changed. I am remaining positive that once over the chemo herceptin will keep me stable for years to come - hopefully anyway just need to get chemo out of way first. Always been really active so probably wont like being confined to house etc but least it will be through the spring and summer so hopefully we will have some sunny weather so I can sit in the garden with a hat on!!xx

JulieD
Community Champion

Re: Bone mets - please join in

Hi Porkie,

Sorry to hear you are having to go onto chemo but hoping it will get you bsack to stable quickly and without too many SE's.

Linyloo I'm not actually on your treatment myself but have several friends who have been. Good cream seems to be Udderly which you can get from Amazon and if you buy two it will mean you save on postage apparently.Hope all goes well.

How are all my bonet friends in this dreadful weather? Hope not too many of you have been flooded. I live on a hill in Sussex so we are ok in terms of flooding but have taken a battering, fences etc needed fixing.....

Hope you all have as good a week as possible xx

 

nicky08
Community Champion

Re: Bone mets - please join in

Hi Porkie

Interested in your post, has your receptor status changed to HER+ now?  I think this is more common than the 'statistics' say.  I had a biopsy taken last year and found I am now HER+, although still ER and PR +, having been HER- for nearly 10 years since my primary was checked.  I was due to start the same regime you are going to but couldn't due to very low heart function.  I have now had my scan results (thanks for asking Linda) and Capecitabine is still working well (phew!) and my heart function is now completly normal so this regime would now be an option.  Good luck with it and hope it works as well as reported.

Linda, hope all goes well with the E/E combo and you don't get too many side effects.  Sometimes I think we can almost make some of them worse by thinking too much about them. I don't mean this flippantly so I'm sorry if it sounds like that but when I started Xeloda I felt so nauseous because I remember how awful I felt when having IV chemo some 5 years before.  I started taking some anti nausea medication and that made me feel even worse although I thought at the time it was the Xeloda. It was only reading by chance a post on here about the side effects of the anti nausea meds that I realised it was them not the chemo!  Luckily have not taken them since and also don't suffer with any nausea.  Having said that all the physical SE's like mouth ulcers and spots are defintely not in the mind so I am not belittling them at all.

Good luck to all boney, and other secondary, ladies, hoping all your treatments are working well for you with minimal side effects.

Nicky x

Porkie
Member

Re: Bone mets - please join in

Good luck with the tablets Lindyloo - I hope they work well for you without too many nasty side effects. When I was on it I continues with denusomab (didnt realise there was a conflict) but didnt suffer with too many spots - just the odd one. No longer taking as yesterday saw oncologist and having had biopsy results wants to change treatments. Have to go on chemo - first time since secondary diagnosis - so feeling quite scared at the moment but will be ok once I start. Because I dont really like needles etc opted to have portacath fitted and will then be on docetaxel, herceptin and perjeta. Hopefully this will kick progression into touch and then can have an easier regime in 6 months or so. Take care all you boney ladies.xx

LYNDYLOO
Member

Re: Bone mets - please join in

Morning Julie

 

Is there any particular creams that worked for you that you can suggest for me.  Normally I have quite greasy skin so I have not needed to bother very much with face creams.  If my skin gets dry I normally just use nivea under my tinted moisturiser,  Have they decided yet treatment you are going on next.  Going at 1 today for tablets feeling nervous alrdeady.  When I was at oncology yesterday they said if it effects my quality of life they would take me off.  Can't remember are you the new injection? I went onto this website regarding interaction with the 2 drugs everolimus and denosumab it recommends not to be used together as it can cause rashes and spot on the skin.  Took this information with me yesterday asked them for their oppinion they have now took me off denosumab for a couple of months to see how I tolerate the new drug. The internet is a source of useful information.  I let you all know how I get on with the new drugs.  Take care all you boney ladies

LYNDYLOO
Member

Re: Bone mets - please join in

Morning Nicky/Chris

 

Sorry not replied sooner as I mentioned in my last message it was hubbies birthday yesterday took day off work to celebrate,  In fact been celebrating all weekend just in case I can't drink or go out anymoreGoing to get E/E tablets today getting really nervous.  Went to onology yesterday discuss my worries about treatment. What they did which puts my mind at rest if the treatment does not suit me too many side effects which effects my quality of life they would take me off it and just leave me on exemestane only.  You mention below you are due to have scans when exactly is it this week? Hope you get good results

 

I asked again yesterday if I can carry on working all they said it was up to me.

 

Julie when you were on E/E did you get many infections which seemly is also one of the risks.  Also were you able to go abroad on holiday the year you were on it?  Will be on later this week about how I get on.

 

nicky08
Community Champion

Re: Bone mets - please join in

Hi Linda
I'll apologise now if I forget to reply to all you asked as I can't see your post, one of the more annoying changes made to the forum, that along with the Latest Posts no longer being seen on the front page I think we all miss out on whatever we are all up to treatment wise. I tend to check a few posts on the secondaries section plus another I have been using for 5 years but other than that unfortunately don't have time to scan all the various sections to help with advice for newbies which is a shame.
As Chris has said, I will be on Capecitabine for as long as it works, which could be sooner rather than later as I'm due scan results soon. I have a complication that a liver biopsy showed I am now HER+ having been HER- previously but have so far not been able to have Herceptin as my heart function has been so bad. This was brought on by my previous chemo in 2008 and I'm hoping that things are gradually being resolved, again, I'll find out more in the next few days when I have a heart follow up at The Brompton. As of my last scan a few months back the Capecitabine was shown to be working, as for Chris, with about 50% shrinkage of the liver mets at that time, a slower response than for IV chemo I think but a lot kinder on the body overall.
When I had chemo 6 years ago the people I worked with weren't told I had mets, I didn't want them to know, so assumed it was for primary. I was a bit difficult at times trying to bite my tongue when I was told,you've got through it, when I finished chemo, but I really didn't want the sympathy stare! When I had to give up my new job after progression last year I just said the BC I'd had 5 years ago had come back and needed to be treated, I hadn't told them I had secondaries as it was irrelevant at the time and I think these days no discriminating questions are allowed to be asked. Hope you cope OK with the new meds and I will read back and edit this post if I think I've missed something from yours.
Nicky x

Chris007
Member

Re: Bone mets - please join in

Hi Lyndylou,

I thought I would share my experience with you. I am now on my 4th cycle of capecitabine for bone and liver mets. I had scan after 3rd cycle which shows partial response which is good so I'm told, so will continue on this until the cancer gets wise and it stops working. So far side effects minimal, during the 3rd cycle I got a sore tongue but this cleared with the help of corsdyl mouthwash and the one week off tabs. I am still managing to have a 'normal' life although try to have a rest in the afternoon. I am also having reflexology which I would recommend to all mets ladies. I do hope capecitabine will work as well for you.

Chris x x

JulieD
Community Champion

Re: Bone mets - please join in

Hi Lyndylou,

I think the thing to try to remember is that we are all different and react differently to different treatments. Some women have had several Se's from EE whilst lots only have a small reaction, try to be prepared ie have creams in stock but hope for the best. I hope it goes well for you, do keep us up to date. As you say, we don't always post but we regularly drop by to check how everyone is doing xx

 

LYNDYLOO
Member

Re: Bone mets - please join in

Evening Nick

 

Thank you for getting straight back me.  Just goes to show we all seem to go on the web site frequently.  I know I don't always post a message but I do go on regularly just to see how the regular people are getting on.  You know when you started on Capecitabine did they tell you how long you would be on it for nothing has been mentioned to me which is scary in inself. At this moment in time I have not mentioned anything to work about my problems and progression on hip.  Apart from Personnel no one knows I have secondaries which is the way I would like it to stay. My hubby works at the same company.  He has been there 30 years and 10 years for myself.  This weekend we are going out for hubbies birthday I am certainly going to have a good drink as once I start treatment can't see me going out at all. We normally go at every Saturday anyway.  I keep saying to hubby I would rather have 6 months they way I feel now than 12 months feeling dreadful which reading the comments sounds anawful teatment.  He hates it when I say things like that but that is how i feel.  Hubby has just came in from work so better start tea. Take care.

nicky08
Community Champion

Re: Bone mets - please join in

Hi Lindyloo
I've not been on the e/e combo but have kept up to date with how everyone does on it via the thread on here. Hate to say it but there does seem to be quite a few side effects for some. I'd imagine you would also need to go to the chemo unit to get the tablets, I do for my Capecitabine when they also check my bloods to make sure everything ie wbc is OK. As to working I was lucky enough 6 years ago when on FEC to take time out on my bad days and continue working on my better days but I was on very flexible hours anyway. This time round unfortunately I had to give up a new job I'd started as the side effects of Capecitabine were very unpredictable in the first few cycles as well as me needing numerous appointments for my heart condition, not to say hospital stays as will! The job I had started really wasn't possible to do in these circumstances although I feel I could go back to it now if there was another opening as the SEs are much better.
Good luck with the new combo, hope it works well for you.
Nicky x

Rowan44
Member

Re: Bone mets - please join in

I am on 6 courses of FEC-T for 6 weeks , got a headache for first 2 days but ok  now , having one course every 3 weeks then tamoxifen and also will be starting denosumab next course of chemo 21st of Feb

the headache has gone today and I feel a bit tired but I am not sleeping well due to steroids I think

hope this helps 🙂

LYNDYLOO
Member

Re: Bone mets - please join in

Evening boney ladies

 

Not been on since last week when I asked about the e/e treatment. Got an appointment to go to chemo unit next week still really worried.  Can't see light at the end of the tunnel.  Did you ladies have to go to the chemo unit to get your tablets each month,  As I said last week I work 31 hours at the moment.  Did you ladies that were on that treatment able to work at all and were able to go out and about as usual.  Does it cause to have a fussy head like on chemo which I finished 4 years first on fec then on Taxetere.  No one has said how long I would be on it.  Do you just stay on it till it stops working.  Nicky have you been on this treatment as I know you were diagnoised about the same time as me with bone mets.  Sorry to keep rambling on I am just really scared.

Rowan44
Member

Re: Bone mets - please join in

Thanks Nicky  🙂 that's put my mind at rest the next hurdle , they also mentioned I will have another drug every 6 months  but I cant recall the name my poor befuddled head ! They mentioned I would need to be monitored on the denosumab for calcium levels  as I was asking about self administration as I am not needle phobic and have done sub cutaneous injections before , look forwards to seeing a link to any threads on this

Glad to hear the denosumab hasn't got many side effects tho 🙂

 

Rowan xx

nicky08
Community Champion

Re: Bone mets - please join in

Hi Rowan44

Yes, there are quite a few of us 'boney' ladies on Denosumab.  It's the newest treatment available and, in my opinion, the easiest and quickest to administer with no nasty side effects.  It is given 4 weekly by subcutaneous injection ie under the skin rather than into any veins.  Mostly it seems to be given in the fatty area of your stomach but some ladies have it in their upper arm.  Hope you get on well with this as well as the FEC T chemo.

Nicky x

ps I'll try to find the Denosumab thread I started and 'bump' it up to the tope of the page - can't remember if it's in the treatments section rather than this 'living with' section but have a look in both.

Rowan44
Member

Re: Bone mets - please join in

hello Ladies , 

I had a met on my sternum and am on FEC-T chemo had first dose on Friday , they say with my next chemo session I will also start Denusomab - is anyone on this ???  

2catlady
Member

Re: Bone mets - please join in

Hi,Lynnq, I couldn't get anyone to insure the cancer. So I just got m&s travel insurance that would insure me for anything but nothing relating to the cancer. My onc was happy for me to go as he said it was very unlikely the cancer would cause any problems in two weeks. And that most insurers would blame the cancer on any health problems and squirm out of paying. He said most of his patients go on holidays without their cancer being insured. I actually felt the best I have in months while there ! I used antibacterial gels all the time ,didn't go on anything too bumpy to protect my back and had a wonderful time.the only person who got ill with stomach flu was my teenage son .I would do it again at the drop of a hat.
Helen xx
Julesie
Member

Re: Bone mets - please join in

Hi Lynn. Try Insurewith. I know someone who has just got insurance for the States through them and I'm awaiting a callback from their medical advisor for a skiing holiday.
Lynnq
Member

Re: Bone mets - please join in

Hi Helen. I would love to go back to Florida with my grandaughters.....how did you sort out insurance, i am finding it difficult enough to get a week in Spain....
2catlady
Member

Re: Bone mets - please join in

Hi,lovely ladies,hope you are all doing well. I had a fantastic time in Florida and two weeks of disney magic not thinking about mets, onc,meds,injections,IVs or all the other nasties we live with every day. Hardly any pain and great sleep wish you could get it on NHS!
It's a shame as always to see some new ladies joining us in the two weeks I've not been reading posts. I wish you weren't joining us but you have joined a very supportive bunch of ladies.
Huge hugs to you all,Helen xxxxxx
Guest user
Not applicable

Re: Bone Thats - please join in

I see, okay thank you for all your help :smileyhappy 🙂 

vercors
Member

Re: Bone Thats - please join in

Gadir, 

I had 4 years between primary and secondary so yes my hair grew back thick and very curly for about 18 months; I stopped using scarves about 3 months after I finished chemo. I kept very short hair for about 2 years, as I hated the curls. 

Letrozole is an hormone therapy, like Tamoxifen: http://www.breastcancercare.org.uk/breast-cancer-information/treating-breast-cancer/hormone%C2%A0the...

Guest user
Not applicable

Re: Bone Thats - please join in

Hey Vercors, 

 

Okay that's reassuring to know, what are those meds for if they are not chemo? Because my oncg did mentioned down the road she will wean off some chemo and maybe put me on other things, Im assuming that? Also has your hair grown back fine etc? And a worry in the back of my mind, I am young, I do want to one day become a mommy... Do we have a future in that..? Thank you for replying to me xx

vercors
Member

Re: Bone mets - please join in

HI Gadir, 

ALso Her2+. While my bone mets are now greatly reduced, I will never consider myself as NED (unfortunately) but as stable. Stable is my favourite word. 

I have bone mets, but I am not on chemo. Letrozole, Herceptin, Zoladex and Ibandronic acid. 

Take care. 

Guest user
Not applicable

Re: Bone mets - please join in

Hello All xx

 

 

I am also a her2+ I've been diagnosed for a year now, had a lumpectomy done and been on herceptin/perjeta/toxeter regimen. Unfortunately my CA spread before I started chemo down to my pelvic bone .  My doc says I've been doing good with my chemo its been looking stable, I will be having my mastectomy in a few months. Do I worry because it spread? My oncg says things like I will be on chemo for life, that word frustrates me! Will I be? When she says im looking clean am I considered NED? Will I ever be considered that? Or no because of the spread? (scared)

 

Sincerely, 

Gadir xx

roxy12
Member

Re: Bone mets - please join in

Hi lindy loo, I also have taken e/e combo. It kept me stable for over a year although I too had a sore mouth. It also gave me slight nose bleeds but these were only slight and not a problem. I lost about 7kg mostly because of the sore mouth but my appetite was reduced. I did have long spells where my mouth was OK. My nails suffered too.After saying all this I did have a pretty good quality of life on this combo. I have remained very active. Walking swimming, yoga etc. However, due to progression I started taxotere three weeks ago. I was a bit scared of going on chemo but after the first week it hasn't been half as bad as I thought! Aches and pains but no nausea or sore mouth yet and my appetite is better than it has been for a long time. Like porkie, I am glad in some ways to be off the e/e but it did work for me for quite a long time. Good luck with whatever you decide. X
Porkie
Member

Re: Bone mets - please join in

Hi Lindy Loo - I am one of the ladies that has posted on the EE thread. I have had bone mets now for nearly 3 years, diagnosed with primary. Letrozole worked for me for over two years but last Sep I commenced EE. I think the side effects are not always explained fully - I found the mouth ulceration awful straight away so had my dose reduced after a month to 5mg one day, 10 the next. Didn't really suffer from spots but last scan in December showed some fluid on lungs which is another known side effect. Over the last couple of weeks I have had swelling in neck lymph nodes so I do not think it is working now. Currently awaiting an ultrasound and then depending on this may have to change treatments.Given the side effects I will not be that sorry but I know that some ladies have had really good success so like everything else think it is a bit of a lottery. Good luck xx

LYNDYLOO
Member

Re: Bone mets - please join in

Evening Lucy

 

Thank you for getting back to me so quickly.  Managed to read the comments on the link you sent.  The side effects sound horrendous.  I am not due to go the drug for a couple as the hospital has to apply for funding.  Can't see anyone been able to put up with sore mouth and problems with their skin.  The more I read about it the more i am put off.  In one respect can't understand why the hospital has deciided to put me on it.  I have only taken letrozole which has worked fine for 4 years.  I have a bone and CT scan or organs recently and what the hospital said slight progression in left hip and my tumours markers were going up.  They started at 15 in 2010 and had stayed that way until January 2013 when they started to creep up gradually and are now at 41 which is just above the norm.  The CT scans were all OK thank the lord.  I have been on a website regarding the trial of everolimus/exemestane people are usally are put on EE when letrole etc has not worked. I unstand there are 7 hormone type treatments so there plenty more for me to try before going this this extreme.  I am 61 now but still work 4 full days a week which I would like to carry on doing.  Anyone on these drugs were they still able to work.  One of reasons I work is take my mind of problems.  Once again thank Liz and Lucy for getting back. Going to get myself a large glass of wine so night night for now.

Lucy_BCC
Member

Re: Bone mets - please join in

Hi Lyndyloo

This may be the thread you were interested in :

 

http://forum.breastcancercare.org.uk/t5/Treatments-and-medical-issues/anyone-on-everolimus-exestamen...

 

Best wishes

Lucy BCC

lizcat
Member

Re: Bone mets - please join in

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

LYNDYLOO
Member

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Can you send me the link again please it seems to have disappeared when I did my reply. With this being a new treatment they must wanting people for a trial.

LYNDYLOO
Member

Re: Bone mets - please join in

Hi Liz

 

Thank you for getting straight back to me.  Sounds awful.  You did well keeping onto it for a year.  I had terrible acne when I was a teenager and that was bad enough.  I have been spot free since by late twenties. I have got really good skin now.  I spoke Clare at the hospital who initially ran the trial for Ibandronate against zomata which I took part in.  I informed her when I go on the tablets if they do not suit me I would be taken off them.  There is no point in having a treatment that supresses the cancer then makes you feel really ill.  I had enough of that when I was chemo which I finished 4 years ago. By the way what hormone treatment are you on now.  I have been fortunate I have had a good quality of life.  I still work 4 days a week.  Love by Fridays.  Enjoy going swimming a couple nights week.  The way I feel at the moment I would I would rather have a shorter life feeling relatively OK than a longer one feeling terrible all the time it is not worth it.

lizcat
Member

Re: Bone mets - please join in

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

LYNDYLOO
Member

Re: Bone mets - please join in

HI Liz I have not been on here for a while. I noticed you have been everolimus/exemestane. How did you cope on the treatment as that is what oncologist is putting me on. Been on just letrolzole for the last 4 years which was OK. I would love to hear from you