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Bone mets - please join in

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Re: Bone mets - please join in

Yeah Sharon sometimes best to just be told what to do and go with it. Well done with using the cold cap I've heard it's painful X x
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Hi jultz.at The moment I have docetaxol chemo.and demusmab monthly injections monthly for my bones.I am er so cant have Herceptin perjeta...your decision is difficult about more docetaxol.its hard to be given a choice isn't it? ..take care.sharon.xx
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Hi.Carolyn.u had fec/cmf in 2004.did lose my hair.then it came back in my bones and peritoneal in 2013.I had capecitabine for 15 months.no hair loss..then letrozole for ten months.then liver Mets.so back on iv docetaxol.have had 3 so far.have used coldcap no hair loss so far...bur other horrid side effects.yes Herceptin and perjeta.and kadcyla are for her2 ...takecare.Sharon.x
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Hi Sharon I thought you were going on h and p too I must of picked it up wrong. I still don't know what to do about the extra two docetaxcol I can have if I'm ok can't decide what to do X X 

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Hiya Scratch 

 

You must be like me ..........I think the original tumour had to be HER positive for the magic of  Herceptin to b any use and I am not !!

 

I know a lot of friends that had this and tolerated it well and of course no hair loss like chemo. 

 

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Hi jultz..yes my fingers go wrinkly and reddish.i think they went like this on chemo fec years ago and when I was on capecitabine.i keep tapping wrong letters on phone as well...yes I leave endless cups of tea etc.just have sips dont want anymore..i won't be having herc and perjeta as I'm er... Dont know what they'll do for me next..at least youv only got one more docetaxol to go.😻 xsharon
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Hi Sharon 15th of March was a bit long for you to wait 😵 I've had five my legs are a bit weak and I've got no taste find it hard to drink anything but after about a week and a half I start to pick up again I'm looking forward to just being on the h and p side of it but I worry that we need the chemo. The oncologist said h and p work on there own. The docetaxcol is hard going the ends of my fingers feel wrinkly like I've had them in water for hours X x
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Hi jultz get results on 23rd now I pushed for this as they originally had said 15thmarch.so they bought it forward...iv got no 4chemo Tuesday.are the side effects slowly accumulating.i feel washed out most days.xx take care❤ sharonx
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Hi cmc

I have had a similar experience as your Mum so maybe I can help? I had my bone mets dx nearly 5 years after my primary. At this point I was still ER and PR+ (and HER2-) I was also on hormone treatment (anastrozole). After nearly 5 years I was then dx with liver mets. Having read on this forum about the fact that receptor status can change, particularly HER2 status, in up to 30% of cases I insisted on having a liver biopsy done. This showed that I was now HER2+, as well as still being strongly hormone postive. Therefore hormone treatment alone would not have kept my mets at bay. I did have Capecitabine which kept things stable, and shrunk most of the liver mets, for nearly 18 months - which is what I assume your Mum is now on? I couldn't have Herceptin at the time due to low heart function, however I am now on Herceptin along with a similar drug, Pertuzamab and still take the hormone tablets. If her liver mets are accessible it would be useful to have a biopsy done to check if any of her receptors have changed, if they haven't it's still not a wasted procedure as it will just confirm she's on the right treatment, if they have changed then so can her treatment options.

Feel free to ask me any questions. It's great you are being such a support for your Mum, I know it's tough for our families and my own daughters (both in their 20's) find it very difficult at times - and believe me there have been some very difficult times for us.

Nicky x

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Hi Sharon when do you get your results ? I'm a bit rough today had number 5 chemo on Tuesday still not sure if I should take the extra 2 X x
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Jultz..hi had scan.now the wait..how are you getting on ?x
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Hi Sarah Louise,

 

I was diagnosed at the end of October (originally just with lung mets but now confirmed I'm a bony lady too). I'm being treated at the Churchill. I'm on Zoladex and Anastrazole and about to start on Denosumab.

 

I went to a BCC Information Day in Oxford and Lucy Ridgway, a physio from the Churchill gave a very useful presentation on exercise. Might be worth asking if you can speak to her but the key point she made for bone mets was that taking measures to avoid falls is key so avoid contact supports, actiivities that need you to act quickly (e.g. netball, cricket). If the spine is affected, she said you should avoid large movements of the neck/back such as going all the way forwards to backwards, large twists, combined movements - but if an exercise involves the same movement as everyday activities then it’s no riskier than those tasks.

 

Hope that helps,

 

Marion

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Hi everyone,

 

I haven't posted in a while, but looking for some guidance!

 

On here for my mom (caregiver). Mom was diagnosed stage 4 BC with mets in bones in November 2012. letrozole worked great until this past summer. Tried Tamoxifen and it didn't work. Now she has two small mets on her liver. She is now on Afinitor and exemestane. She says she is feeling great. She has bone pain and takes hydromophone to help.

 

I have mentioned to her about this forums for support, but she is more introvert I suppose and looks to herself for inner strength, and her family. I try not to talk to her about it too much because I don't want her to see how worried I am. She is my everything and I am scared! I go through days of feeling empowdered and strong, to days where I am completely lost and scared. I wish I could take this cancer from her. Oh how I wish.

 

Just looking for some helpful stories from ladies with bone and liver mets. Scared treatments will stop and this is her first Chemo so I know there are others. This one is a milder one...oral. But scared for when she goes on strong ones and wonder if her body can handle it. Asked the doc yesterday if they should do another biospy but they said she was diagnosed stage 4 3 years ago with estrogen positive and it is very rare it would change. Hmm..

 

I'm from Ontario, Canada. Joined a group from home base and it was very depressing and not as active as this one.

 

Guidance and hope please!

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Hi LadiesI was a Cherrybrooke lady but we have now moved to Winchester. Do you use Force across the car park they were so helpful. I miss rainy Devon sometimes but my family are all here in Hampshire which is great.  Carolyn I agree about the flu that's why I have hesitated in telling people there is much ignorance out there. 

 

Try looking up Second a Hope it's a new charity that just deals with secondary breast cancer.

 

hope you get your meet ups.

Karen x

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Hiya Barton

How nice to find someone in Exeter too and so you are under the safe hands at Cherrybrook Oncology too. Maybe we ought to meet up sometime and "discuss" our ailments as although family and friends are brilliant - sometimes they think - shes taking  the pills now and its like the flu - it will go away !!!!

Carolyn xxxxxxxxx

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Thanks for the info Vercors, very helpful and inspiring. I'd be interested in the online support group she refers to x
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Hello Carolyn, I think we probably attend the same hospital as I live "a long way away" too, in Exeter. I agree, it's difficult to get to other places in the country. I might try the tonic water trick, on your personal recommendation. Not a fan of ginger tea, though. Hugs. Barton.x

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Carolyn I too am a member of the private FB group. I have found the ladies offer loving support and are happy to share their experiences, It's very like this forum. You may find it helps. Sometimes too much talk about SBC can increase anxiety. I dip into both groups. Love to all ladies. Sue x

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Carolyn, 

The charity is called Second Hope http://www.secondhope.org.uk/ 

 

The interview can be seen here. 

http://www.itv.com/lorraine/health/charlie-brooks-and-her-friend-lorna-on-secondary-breast-cancer-ch...

 

Private message me if you want to find out more about the online support group she is referring to . 

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Hiya Sarah Louise and all.

Im in Devon so a long way away from Oxford . Dont think there are many ladies that live this far down so Im glad of the site  !

It sounds like your first chemo has been very easy to tolerate and that you are fit and active which is good. Ginger tea is very good during chemo and if you do get a sore mouth - I found ice lollies very helpful.

Back weeks ago there was a posting on the thread about having a glass of tonic water before bedtime and I tried that last night and wow ...slept for 6 hours without a wee or sweat etc. so thank you. ( Of course I would have preferred a splash of gin to compliment it but never mind !!) 

Just watching Lorraine Kelly on breakfast tv this morning and there was a nice lady on it also with secondary bc for 4 years and has set up a website for support so I think you have to go on Breakfast tv website to find the thread. Might be another source of support for us elite ladies with bone mets etc !!

 

Carolyn xxxxxxxxxxx

 

 

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Good luck for today Sharon ❤ X x

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Thanks Vercors... I'll take a look ☺ x
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Hi Sarah Louise, i don't post here very often but follow the thread closely. 

I am also at the Churchill. Breast Cancer Care has a monthly meet up on the first Thursday of every month. There are a few ofus who are local in the group. There is info on BCC website. 

I have recently changed treatment due to progression. Still I did well 4 years on letrozole and Hercpetin. Letrozole has been switched for Exemastane. Glad to report that I have had no side effects. Will know in April if it works. 

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Thanks for the lovely replies ladies!

Carolyn- I'm being treated at the Churchill Hospital in Oxford. Anyone here local to me?!

As for excercising does anyone have any tips on what I should be doing? I'm meeting with my consultant tomorrow so I'll ask him too. Before I was diagnosed I attended Bootcamp 3-4 times a week and was very fit. Since being diagnosed I've not done much apart from walking to and from the school 😕

Supplements - I've just started taking Ginseng tablets. They boost your immune system and apparently slow the growth of tumours. I'll let you know how I get on with them!

Mint-tea thanks for the little pointer about the article.... wow what an inspiration!!!!

Sarah xx
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I was told the "normal" was below 25. When I was first diagnosed with secondaries from the start mine were 12!! When I had progression they gradually crept up to 67. Not very high I know but every time I had progression they match with an increase in TM. End of Dec they were 14, end Jan 19 and due again tomorrow. Hopefully no further jump in them, but im not that hopeful as being feeling very tired recently!

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Hi Glo..you mentioned in yor post that your tumor markers had gone right back down to normal...what is 'normal'?

I havge skin mets which are very dificult to monitor as they dont show on scans etc so i asked for my TM's to be done....wish i hadnt now as they have gone steadily up from 37 to 51. Onc Dr told me not to worry about small jumps but i had been hoping for a little drop after starting different treatment...just something else to stress over now!

Scratch...good luck for Thursday...scanxiety is truly awful...i even got it before i had pre op tests which didnt even include a scan.!

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Thanks glo.im halfway thru docetaxol scan on Thurs so full of anxiety at the moment.thanks Sharon.
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Hi Sharon,
I was on paclitaxel from last June- August (12 weekly treatments in all). I had reduction shown on scan after 9 sessions, then further reduction on scan in Oct, after finishing chemo mid Aug and taking tamoxifen afterwards. I am still taking tamoxifen, tumour markers dropped right down to normal and continued to do so up until end Jan (due again tomorrow so we'll see what they are now!) Due another scan soon so see if tamoxifen still doing its job!! Not sure it is as feeling quite tired again and Onc did say you get about 6-9 months out of each chemo treatment!!!
Glo xx

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Sarah Louise 

 

I know you have had lots of lovely replies, but for a little bit of inspiration,  have a look on the "but doctor I hate pink" Facebook page.  There is a link to an item on a USA news show where 18 years ago a lady was given 18 months to live - 17 treatments later (over 18 years obviously) she's still living a great life!

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Hi glo .regarding yr liver Mets.glad you had reduction.i was wondering what chemo you are on .thanks Sharon.
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Im all for anything that makes life less painful and will be interested in keeping up to date with how you do on Devils Claw though. Please keep posting on your progress.

 

I have bone mets in hips pelvis and knees and am not sure if its the Letrozole causing me so many aches and pains or the actual cancer !!  BUT needs must and if this little pill daily keeps control of the bone mets I will keep taking it !!! Hopefully, in years to come they will find the magic bullet that doesnt cause any side effects and cures us !!! If not in time for us - maybe the next generation of women will get more advanced treatment, 

 

My Mum had breast cancer in 1968 and just had a basic masectomy .. no rads or chemo afterwards but managed to keep going to 1975 when she died. She did lots of trials near the end of her life - early chemo and a trial where they took away the pituary gland in an attempt to stop the cancer spreading. Back then breast cancer was very rare and not talked about  Forty years later the survivor rates are so much better and treatments so much more advanced.

 

Carolyn xxxxxxxxxxxxxxxxx

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I asked my onc before starting it and she was fine with it. Always safer to ask your onc before you start any supplements! She said that there was no scientific proof that it works but that there would be no harm to me to try it as it might help a bit. I've only taken it for two days now and there does seem to be a very slight reduction in stiffness but that might just be wishful thinking!
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I have just googled devils claw and although Im a great fan of vitamins - dont think I would risk it with the cancer drugs some of us are taking as it does seem to have side effects that could interact with our treatment . 

It says that it should not be used if you are taking warfarin - when I had my PICC line in for chemo back in 2004 I took warfarin to stop blood clots and its a hidden danger along with heart probs etc. 

Please excuse me if Im speaking out of turn.

 

Carolyn xxxxxxxxx

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Stillhere, I know Devils claw is used for horses!! I know one who is on it now and his on and off lameness is sorted, it was with a wry smile that I saw on a random page somewhere that it could be used for humans too! Hope it works as well on me as it has done on Sam!
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Hi Sarah Louise, I'm also doing well after primary in 1995, recurrences in 2009, 2011 and a secondary diagnosis in July 2013. I've never been given a prognosis either, just told that I can be treated, probably for years. I've had no further progression since then on Capecitabine and Fulvestrant.

At the moment I am fit and well, gave up work after my secondary diagnosis and am lucky to have a lovely outdoor life with 2 horses, 2 dogs, a wonderful supportive husband and 4 kids between us in their 20s who have all left home.

I have down days as we all do but I also feel blessed.

London 1, I haven't tried Devils Claw but, don't laugh, it's a tried and tested supplement for equine arthritis! It's been very effective as an anti-inflammatory for one of my horses xx

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Hiya Sarah Louise .... So glad you have had a good response on this board as there is a wealth of knowledge and kindness here. 

I think you are very brave to try the cold cap but the success rate is very good from what I have been reading and you will feel better with some hair !!! I think you might loose a little hair but Im sure they recomend that you have it cut short, dont wash it or brush it too much . As your immune system is going to be low - you need to avoid public places and you know the biggest source of germs ? Library books and Gym Equipment ... thats a big surprise but its true. As you are so young Im sure your treatment plan will be the very best that they can offer ...where abouts are your receiving your treatment to ? ( dont answer this if you dont want your location known ) 

I would say to avoid too much googling on breast cancer as there is so much quacky stuff posted from various people that it gets very confusing. The one thing I do find interesting is the blog from Victoria Deryshire ( she is a bbc presenter) and going through chemo now with the cold cap and that might be worth a little visit.  

Apart from  my cancer pills I do take vitamin C and cod liver oil tablets everyday - one to try to keep colds away and the other to stop my bones cracking !!!!  

Not very sure that this posting is very helpful but I thought it better to post some twaddle so you know there is support for you out there then not post at all . You will probably think " oh no not her again " 

 

Carolyn xxxxxxxxxxxxx

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Hi Sarah Louise,
I was diagnosed with secondaries from start in Sept 2010, lung mets. Had 4 years of letrozole which cleared them completely! Progression in sept 2014 with liver mets added in, e/e combo, further progression March 2015, now add in bone mets too, onto capecitabine, then onto IV chemo in June 2015. As of Oct 2015 there had been reduction in all mets. Due another scan shortly! Had various complications along the way (pleurodesis after pleural effusion, arthritis and mets in hip and a hip replacement being considered but 51/2 years on I am still here and going nowhere soon!
If you are ER+ you will probably respond well to hormone treatment, it kept me stable/improving for 4 years!
Good luck with treatment and keep checking in here, if only to read and get reassurance.
Glo xxx

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Sarah Louise, I too was told that if lucky I would have two years but by the BC nurse not the consultant. That was over two years ago! I was diagnosed with BC 20th Dec 2013, then with liver and bone mets soon after. I have had two lots of iv chemo (intravenous) with tamoxifen after the first chemo which didn't work, now on Letrozole which has kept me stable for over 8 months to date. I also have Denosumab every 6 weeks with no se (side effects) for the solitary bone met. I am very well too, no pain, the Letrozole does make me very stiff and achey but as I am 54 chances are I would have been stiff and achey as part of 'standard' menopause symptoms too.

I recently came across new research from Jan this year saying that survival in stage 4 breast cancer is improving, notably so in patients treated initially surgery. (From cancer therapy advisor)
I was originally told that surgery wasn't an option for me and after the first chemo had scans done to ask for a second opinion when the first one said no. Unfortunately the scans showed progression in the multiple liver mets hence 2nd lot of chemo. But if they tell you that surgery to remove the primary cancer is not possible there is now evidence to say it helps!

Since I am stable I have also asked to be considered for surgery again. So let's see how that goes!

Tips for living with horrid disease is keep exercising and giving yourself treats and try to enjoy yourself on your own AND with family as often as possible! I cry a lot too but in the circumstances I think that is just fine! Crying after all has always been my way of relieving emotional stress! So I live with this as best I can. I don't often post but knowing that the forum is there has always been a source of comfort.

Ps I have just started taking Devils claw tablets as a way to eliviate the se of Letrozole. My onc said I could try it, there is no scientific evidence that it works but anecdotally it does seem to help some people. Early days for me and no real change yet but wonder if anyone else has tried this or other natural treatment to help?
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Hi Sara Louise.i had mx
Fec chemo and radiotherapy In 2004.then I had 9 years remission.then diagnosed with widespread bone mets and peritoneal.the consultant said 3months.i remember thinking oh I'll die at Xmas then...well I went on capecitabine chemo which helped my bones and cleared completely the peritoneal.then the capecitabine stopped working.and I was given letrozole for about ten months.this didn't work got peritoneal back and liver mets.bones going well on demusamab. Now I'm halfway thru docetaxol and hoping it works scan on Thursday.i lost all my hair un 2004 but on this using a paxman cap and so far so good.not much lost...so these prognosis are out of date...so many treatments for us.sleep loss seems to accompany our illness.must be our minds doing overtime...best wishes Sharon.❤
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Hi Sarah

I get really annoyed that consultants quote figures like that, as others have said, as they are often out of date and don't take into account new treatments that are currently being used. Grrrrr. It really doesn't help anyone other than make us, the patient, anxious and scared. As I've said to you on another thread I have been living with mets for 8 years now so 'statistically' I should have been dead for 6 of those!

Hi Lynn, how lovely - a walk on the beach 😊 And I'm glad you are having such a lovely time, it will certainly re charge your batteries, enjoy the rest of it.

Nicky x

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Hi Sarahlouise, please don't think too much about what onc has said about your prognosis, quite honestly nobody knows he/she is just going off statistics!!!!! Which due to new treatments these are now outdated. Cancer is so individual and no one person is the same, my onc has never mentioned the word prognosis all she told me on my first consultation was it cannot be cured but can be treated. 

Hugs Janette xxxx 

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Hi Sarah Louise

 

I am on holiday at the moment so not been posting much.   We are having a lazy evening so just thought I would catch up.

 

i was diagnosed Oct 2012, primary and secondary at the same time.....I have only ever had Letrozole as my cancer is strongly ER+.   

 

Had secondaries in spine and peritoneal area and skin.   Was told a prognosis of 2-3 years, and the peritoneal

may be a little less.  My peritoneal mets are no longer showing and my bone mets have remained stable, and/or healed.  The one skin met I had was removed and never recurred, so these Prognosis they give us are just numbers....here I am more than three years later - still get anxious and have sleepless nights but proof that they are often inaccurate....

 

hi to everyone else...due to fly home on Thursday, had a wonderful time, went for a lovely long walk on the beach today - can't believe how well I feel

 

best wishes to all, 

 

 

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Hi Sarah Louise,

Welcome to the board although sorry that you've had to join us. Re the prognosis, so much depends on how your cancer responds to the various treatments that they really can't tell at this stage, so please don't take it as a given. I think 2 or 3 years is some sort of overall average but that doesn't tell you how you will do. All the best with your treatment.

Tournesol x

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Thanks ladies, it's so nice to hear your stories and to know I'm not alone with this. Unfortunately at the moment it's all I can think about, morning noon and night. I'm not taking anything for granted and spending as much time as I can with the children and husband. I find myself getting teary when the children do something lovely and I have to quickly stop myself before they realise that Mummy is upset.
When the consultant told me the cancer had spread he said my life expectancy is around 2 yrs. Was anyone else told this? It almost felt as if i had neen given up on! I had the knee jerk reaction of " no way, I'm not giving up that easy" and have continued to have this attitude most days. I say most days as of course there has been a few days where I have felt absolutely rubbish and just cried all day.

As for chemo, I asked to wear the cold cap. It was uncomfortable to start with but became more bearable as time went on and so far so good. If my hair does fall out I will be devastated, not just for me but for children. The hospital where I am being treated has a wig shop so I can pop in there if needed. Carolyn.... you really made me laugh tonight when I read about your wig disasters!! 😂
I'm really glad I've found such a welcoming place to talk to others. Thanks ladies xx
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Hi Sarah Louise, I've was only diagnosed with SBC in pelvis and spine 7 months ago and, at the time of diagnosis, and for a few months afterwards, I was in a lot of pain and quite depressed. However, the pain is much less now (due mainly to bone strengtheners and radiotherapy)and, to be honest, I'm much happier and don't think about cancer all the time any more. I think that seems to be the pattern with most of us after the initial shock.
I had been on anti hormonal medication for about 8 y years when my cancer came back so it doesn't work anymore for me as the cancer has become resistant. However, hopefully, once your initial chemo is over you will find that the anti hormonal medication will be very effective for you as you haven't had any exposure to these drugs. These treatments are usually much easier than IV chemo. I certainly had very few side effects. Although, to be honest, IV chemo wasn't too bad for me either when I had it 10 years ago.Like Carolyn, I found the hair loss hard to cope with. I think when I go on to chemo again I might go on one of those Look Good Feel Better courses. At the moment I' m on tablet chemo (xeloda) which I'm not finding too bad at all and it doesn't make your hair fall out.
As everyone has said you get great advice here and everyone is so kind. Keep posting. All the best xxx
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Hiya Sarah Louise , Think by swapping to bone mets board you will get a lot more support from ladies that have a huge amount of knowledge and kind hearts too,

 

 

I think the one thing in common between all of us is " CHEMO"   most of us have had to go that route sometime in our journey. I had mine in 2004 - FEC/CMF which was 12 sessions but if I remember I was ok through it apart from the hair loss which if you are like me - vain -  I hated . Not sure if you have decided to have the cold cap ? a lot of the ladies here have used it and managed to keep some hair and dignity !! I had a nightmare with the wigs .first one I opened the oven door and it caught fire almost . Second one I got paint on when I decided ( chemo brain) to paint the garage doors and the third one the dog ate. BUT by this time the hair had started growing and so I didnt need to risk a fourth one !!!!

 

I first joined this board in 2004 with the primary BC and met a lovely lady called Sue who was living in Spain and very scared being in a foreign country and we became daily e mail buddies for 7 years and I even went to Spain a couple of times to stay with her . I rejoined in October 2015 when I got the dx of bone mets but  I must confess didnt visit here for many years in between  as I think I just thought I needed to move on and had beaten this deadly thing. 

 

During the chemo dont be afraid to ask for help from friends and family especially with the kids etc and please use this board at any time when you are feeling down as most of us dont really sleep much and someone will reply to you at any time of the day. Im very familiar with silly night time tv and doing candy crush type games at silly o clock too.

 

Love Carolyn xxxxxxxxxxxxxxx

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Hi Janette..i took arimidex for 2.5 years  until it stopped working bt apart from usual se's...aches and fatigue iy was fine. Hope it works for you should you go ahead.x

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Hey scoubiesue your exactly the same as me!! 7 year from primary now have mets in my hips/pelvis ribs and spine and mine also hormone dependant I also had radio on my left hip around 18 months ago. 

Hope you are all enjoying your weekend Hugs Janette xxxx 

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Hi Sarah Louise. I am sure you will fine the ladies very supportive and informative, It's so comforting to be involved in a group where everyone knows exactly how you are feeling. I had BC 7 years ago and thought I was "fixed". In march 2015 SBC was found in my spine pelvis and ribs. So far I have been treated with hormonals and one session of radiotherapy on my femur. Wishing you well . Sue xxx 

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Hi Sarah louise, I have only recently joined this forum too....But since I have it is really helped me, being able to ask questions and read about different treatments too....all the ladies have been so welcoming and it is lovely to know that you can share your worries and concerns with other people going through, or have been through, similar situations. I was diagnosed with my breast cancer in 2011 a couple of months before my 40th birthday. I had a mastectomy, chemo and radio and was put on tamoxifen.....all was well until last november when I found out it had spread to my spine....I have now been put on to Letrazole and Zoladex (to bring on Menapause). In december I also had a surgical procedure on my spine. Am due to start Zometa, to harden bones.....I wish you all the best for your treatment and remember all the ladies on her are very supportive ....Karen x x