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Bone mets - please join in

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Re: Bone mets - please join in

Great news Janette, nothing like celebrating with nice food and a glass of bubbly x

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Great to hear your good news Janette xxx
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Great news!Man Very Happy  Enjoy your feast Smiley Wink xx

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Oh Janette brilliant news so pleased for you xxx
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Fab news Janette - so so pleased for you xxx

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Great news jenette you can relax now x x 

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Hi ladies, yippee my CT was stable 😀markers going down. I explained I was still a bit concerned about my hip / leg pain but she said she wasn't worried, she said that because I have C in my hips and it's a weight bearing area that I will struggle there....does that make sense?? Anyway she sent me for an x-ray on my hip to check how thin my hip bone may be, she said it could be that I might need it pinning but thought highly unlikely as she would expect me to be in a lot more pain than I explained I had. Sorry if iv gone on a little sometimes things are hard to explain in a post arn't they. 

Well we have celebrated with fish and chips and a bottle of champagne courtesy of my daughter  ha ha!!!

Hugs Janette xxxxxxx 

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Hello ladies,

 

just wanted to say good luck to everyone getting results - it's such a difficult time.

 

janette, so sorry to hear how difficult your week has been.  My heart goes out to you.  Just want to give you a huge hugxxx

 

nicky - just fantastic news and out of the blue too.  Best way to get it I think.  You've been through a lot recently so this is just the news we all wanted to hear.

 

im waving to Lynn in sunny Florida - hope it warns up a bit more and can't wait to read all you've been up to when you return.

 

welcome to our newbie's - you've come to the right place.  No one wants to be in this club but we are a great bunch and all support and help each other.  

 

Marirose, hope you're keeping well and looking after yourself.

 

huge hugs everyone. Sorry if I've missed you out.

 

hxxx

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Hello to all you newbies and to my old bony friends

First Lynn great to hear you are enjoying your holiday you have earnt it.

 

Diddy what a great gift to be offered a new rad it sounds much better than the old way I have heard that plans are for a more targeted radiotherapy that fires straight to the tumour I wonder if it is that one.

 

Nicky what great news about your CT results I go for one tomorrow to see if cape is working hopefully the onc will have the results for next Wednesday when I see her.

 

Can I ask everyone who miss our lovely Belinda to visit the dedication threads she deserves a mention thanks to Julie for starting it.

 

Best wishes to all xxx

 

 

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Hiya Diddy 

 

Just wanted to say all the best for your rads and dont forget to post on the board and let us know how you get on as its obviously something very special as not many of us have heard of it before. 

 

Unless you have medical knowledge ( doh - I dont as I was a legal cashier before I retired) we have to place our trust  with the Oncology Teams who should be safe hands for our health and survival. 

 

Carolyn xxxxxxxxxxxxxxxxxx

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Hi Lyn, thanks for letting me know your experience of Zometa. I have a holiday planned for April so they have agreed to start it once I get home. Hope you have a wonderful holiday. Thanks again Karen x
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Great news about your results Nicky bet your so relieved x x x

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Thanks Nicky and Scoobiesue, just starting to feel a little easier about it now. Although the lady I got her from has said she won't advertise her til Friday to give me some breathing space  (she knows about the C word) which I think was very good of her. 

Nicky great news about your results, I bet you feel sooo relieved now, I am terrified about seeing my onc in a few hours, just praying the verdict is not too painful!!

Hugs Janette xxxx 

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Hi Diddy,

 

Not many places offer steriotatic radiotherapy so you are amongst the elite! You are lucky, it is a highly acurate form of radiotherapy so more concentrated on the bits needed and less damage to surrounding healthy tissue. Good luck, I'm sure you'll feel the benefit. xx

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Thanks Carolyn. I get the feeling that I'm in the experimental bracket - as even the consultant is down in the treatment room when I'm getting these rads. Fingers crossed it does what it's meant to. X
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Hi Nicki so pleased you had good results.you must be so happy.love Sharon x
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Happy holiday Lynn. Enjoyed reading your post. You really lifted my spirits. Thank you. Sue xxx

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Many thanks Julie. Thought about Belinda all night. I can not believe that she has gone.

Thinking about you all today ladies. Sue xxxx

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Oh, Janette, I feel so sorry for you and know what you feel like. Nearly 2 years ago my 2 daughters insisted we got two more kittens (hmmm, lots of 2's here!) and persuaded me that they would keep me company - having had cats all our married life and our oldest one dying of old age a few years previous. Well, it must have been chemo brain on my part as I agreed despite the fact one had moved out and the other D was likely to! They were gorgeous (kittens and maybe daughters!) but the male one drove me mad as he was so needy and they were always mewing for attention. Anyway it got to the stage that they would be going outside and I realised the male cat would go on the road and I was very worried he would get run over. So, after chatting to ED, who had now moved to her own house at this point, he went to live with her. And after realising the female kitten would do exactly the same she also ended up at my D's. I do miss her because she was such a princess and so funny but it was a huge relief not to have the responsibility even though they are easier to look after than a dog. In my case I do get to see them still, and cat sit for holidays but I think it would be too much for me to have a pet now, I need to think about No 1 - me! So, be kind to yourself. Good luck with CT results it's always a worrying time.

talking about CT results I inadvertently got mine yesterday from a trip to a cardiologist! He happened to have the report from last week's scan and hooray they are all good 😊 Bones stable, 2 liver lesions gone 3rd shrinking and last one either stable or shrinking ( and we are talking very small lesions here). Well pleased. And thanks to him I didn't even have the worry about getting the results as I wasn't expecting them.

Welcome Karen to the mad house! Sorry you have to join us but you are in the right place. I've not had zometa (but have had IV bisphosphonates as well as tablet bisphosphonates) but this was the gold standard treatment for many years. However denosumab seems to be the preferred choice of most ones now so it may be worth asking about having this instead. It's been the easiest bone strengthening treatment I've had over the 8 years I've had bone mets and is the quickest, other than the tablets, to administer. Good luck with your treatment. I had anastrozole for nearly 5 years (after initial chemo) for my bone mets and only had progression once my receptor status changed.

Oh, and I do miss Belinda 😔 such a lovely lovely lady.

Love and hugs to all

Nicky

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Hi Karen.    I am holiday at the moment so have not been on here, hiwever we ar having a lazy evening so just had a quick read and read your post.

 

i have secondaries in my spine -diagnosed right from the start when they discovered my primary - through a routine mammagram.

 

I was put on letrozole and zometa and have had a good response over the last three years.  I have had no progression and some of my mets are no longer visible....they won't tell me they've gone, just that they can't see them anymore....which is good enough for me.  I have few side effects,  I do get anxious though, as do we all.  I also like to try and spare my family, but find the ladies on here very helpful, kind and knowledgeable.

 

last time I saw ONC - about 3 weeks ago - he told me that he was stopping the Zometa since My bones are doing okay....

 

 

hello everyone else.... Florida is wonderful, the weather could be better, but we're making the best of it, having a lazy day today!!!

 

xxx

 

 

 

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Janette I feel heartbroken for you. I do know that I would never have coped with a puppy at this time. Our boy is almost five. He brings us much joy. However I can do so little for him. It was very brave of you to do what you thought was best for you both. Thinking about you.  Sue xxxx

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Hi ladies, hope you're all keeping well.  

Hi Karen, welcome to the forum, sorry you have had to join us but we are a friendly bunch and are always on hand to help, support and let off steam to!  I'm on letrozole,  zoladex and denosumab, don't really know much about zometa  (denosumab) is an alternative, it is given every 4 wks a quick injection in the arm or tummy. 

See my onc tomorrow  ladies for CT results 😕 the first one since starting letrozole in October.....dreading it!!!! On a real downer at the moment, got my much wanted puppy last week but really struggled keeping up with her so she went back to the breeder last night, It was heartbreaking taking her back she was soooo gorgeous. feel like such a failure at the moment and that this horrible disease is getting the better of me!! 

Sorry for the rant and whingy post but know my cyber buddies will understand.

Hugs Janette xxxx 

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Hi Ladies, I am new to the Breast cancer care communtiy. I was diagnosed with BC back in January 2011. I have a very supportive family and friends who kept me going through the tough times. But now its back!....I found out in November that it is now in my spine, luckily found it very early. ....This time though it seems harder to deal with than the first time and family and friends, who are still there for me, are also finding it harder too.....So I decided to come on here so I could talk with other people in the same situation as me.... I had surgery on my spine in December, which has eliminated all my pain, which is marvellous.....I have been taken off of Tamoxifen and put on to Letrazole and have monthly Zoladex injection/implant things.....I saw my oncologist today and she wants me to start having ZOMETA infusions?....I would be very interested to know if any of you have experience of this ...thank you Karen

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So very sorry. I feel so bad that you had to bring this sad news to my attention. Thank you.xxx

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I am so sorry I was away over Christmas and then in hospital from 30 Dec until last week. I will be remembering her in my prayers. She was an inspiration to me when I was first used this site in May.

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Thank you Julie it has been on my mind quite alot if anyone deserved a dedication it was Belinda.xxx

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It's very easy to miss posts about members passing so please don't feel bad that you didn't know. I think I might go and put a post in the dedications page about Belinda which might alert more people. She was a great sourse of information and inspiration and I do miss her

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Dear Sue

You must have not seen the thread from FF telling us that Belinda had died during the weeek leading to Christmas. It was so sad to hear that she has left us because she was well loved  because of her inspirational imput into this forum I miss her so much xxx 

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Belinda how are you? Not read a post from you in a long time. I remember you had a hip replacement. I too have had my hip replaced with a long pin. Recovering well.

Hope all ladies are as well as possible. Love and strenght to all Sue xxx

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Hi jultz, yeah hot flushes can cope with that ok
My oncologist used 153markers On me.some oncologists dont
Mine prove to be a good guideline been on this test for over two years.stillmain check is ct scans.i live in Essex.Sharon x
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Maybe they all use them for their own info but just don't really mention anything. X 

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Hi some onc use TM as a general indication. Mine says bloods good without mentioning a number. I think opinion is very varied has to how useful they are.

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Hi Carolyn do hospitals use markers in blood I wonder that on the American site it's all they talk about but no one ever seems to mention in on here unless I haven't noticed. My oncologist said my blood functions were good too I didn't ask about markers either x x

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Hi - Diddy I had some ordinanary rads on my hip but dont know about the ones you are having. No doubt it will help with pain etc. 

I hope someone on this board can answer you as it always helps to find someone else to compare notes with. 

On primary BC sites the treatments are similar and so easy to find similar postings from other patients with the same regimes but  secondaries treatments seem to be unique .

 

I had my femur pinned and have only found one lady that has had this too so feel quite isolated  with symptoms and things. 

 

CAROLYN XXXXXXXX

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Had my first injection of denosumab this morning and was told I might get a bit achy or jaw ache for a few days so think I can cope with that . 

Visitng the Chemo dept today brought back all the memories of 2004 seeing the ladies all hooked up to drips etc  and I did feel a bit panicky of ever having to go that route again. One thing I did notice is how many ladies are using the cold caps and dont seem to be loosing hair ....maybe its a thing of the future and better ideas will be found in time to  avoid the hair loss.

I saw Oncologist and asked if my blood tests were ok and she said fine so I thought I would leave it at that. Nothing else was mentioned about markers or anything . Maybe ignorance is bliss !!!

 

Being hit with a lot of rain and wind today in the Westcountry as the tail end of the US snow storms -- better the wet stuff than the white stuff .........I say !!  Dont seem to be able to cope with snow and certainly not now with the bone mets and brittle bones !!

 

Carolyn xxxxxxxxxxxxx

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Thanks Sharon I'm exactly the same I've never sat about as much my house gets a quick tidy before my husband comes in or it gets done in bits throughout the day . I actually don't know if I'm lazy or its side effects . I sit watchting crappy daytime tv all day . Do you get flushes on a night mine are horrendous. X x 

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Hi good luck to all awaiting scan results
Xx. Jultz yes ribs ache have to undo bra sometimes
Hope its a side effect for us.xx
Nicki
Yes I think the steroid come down is the worst
Hopefully I get a good few days later this cycle
Iv never sat about so much looking at the dust collecting which my husband cant see.i may as well not done it for years😊 I bought us a cordless hoover last week for lightness as my Dyson is too heavy for me.it's brilliant.xx sent hubby to currys to pick it up
He had big problem at pickup point
...
Maybe its because he was I. Homebase😉 i must get well soon take back control😈 c

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Hi Nicky good luck with your results I'm waiting too 😨 x x x

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Hi boney ladies and a big welcome to any newbies, including anyone who has been reading but not quite up to posting. Don't worry I think many of us were the same but at least you'll know the format now and can recognise the mad ones, ha ha.

A couple of things, Diddyd, good luck with the rads. Although I haven't had to have them some ladies on here have had and from what I've learnt the pain can get worse before it gets better but it seems that once it kicks in it can make huge changes to the pain. Hope it works well for you and keep posting 😊

Scratch/Sharon - I found docetaxel/Taxotere really tough to begin with although the lack of nausea was a big bonus for me. The bit I found the worst was as I came off, or down from, the steroids, boy was I spaced out and had to write off a couple of days as I couldn't do much at all especially driving. Once I understood the pattern of the way I would feel I adjusted what I could and couldn't do so overall found it OK. FEC, back in 2008, floored me for 5 days post-infusion and then I found I literally bounced back and had really good days. Taxotere was tough on muscles, especially leg ones so I would get very a hey and not enjoy my usual form of excercise - walking. I found reading the posts in the chemotherapy thread at the front of the forum really useful as there's lots of ladies with primaries who have had it and shared their experiences. I picked up lots of tips and also what to expect. There's not so many of us secondaries who have had it although more do now who are HER2+ as it has to be given with Pertuzamab and Herceptin as part of that treatment. 

Good luck wi all waiting for results, mine are next week, arghhh.

Nicky x

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Hi. Sharon I've had my fourth get my results Friday I'm a nervous wreck ! Do your ribs ache around your liver area ?,I know what you mean about the kids looking at you I'm only 44 so my own keep looking at me I feel so sorry for them they are older but it's not nice to see people go through this. My hair hadn't came back from first chemo in May so didn't bother with cap x x

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Hello Everyone.
I'm abut of a lurker on the group and don't post very often - sorry!
I'm scheduled to start stereotactic rads to my bone mets tomorrow and was just wondering if on this group has any experience of this treatment? Any advice or experience welcome!
Thank you all X
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Hi Carolyn think my rambling goes confusing.had same chemo as you in 2004.then capecitabime in 2013 which is in tablet form and do.able.it worked well for a year.then stopped working.then letrozole hormone for while didn't really do much good for me.then got New liver mets diagnosed November so now docetaxol which is veins and hard core chemo again..scan soon to see if working been for 3rd doxetaxol today.hair ok for first two but not sure about today ice cap didn't feel so cold.im.just paranoid.this will be fourth grandchild
Iv got three children.son got daughter six.and boy two.one daughter got eight yr old boy.youngest daughter is one due in Feb.every one is a blessing,..yes I feel sad about fitness.my grandson held my hand the other day and stroked my head and said nanny you feel cold.I used to take him everywhere
But I just think I'm still seeing him.and I feel sad for people whose children are this age ..i must be grateful .im 59...take care bet bonus shops are happy to get our trade,,❤ Sharon.x
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Sorry from Sharon.x
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Hi jultx.yes had 3rd docetaxol today.7hours at hosp.awaiting halfway ct scan appt.have you had your results yet from yrs.i am using icecap I'm tired and stressed as my hair didn't feel as wet or cold did she put enough conditioner
Water on?.
Will know soon...,❤
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Carolyn. Your progress is on tack for recovery from femur pinning. I used one stick for about 7 months, Physio can be very helpful. Although my pinning failed the physio did help me build strenght in the leg. I needed to be encouaged to walk without the stick. Eventually it felt strong enough. You can't rush recovery. You will get there.

Ethel did you speak with your consultant? Gathering information is great but he has your Xrays.

Take care ladies.

Sue

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Hi Sharon - what a joy having a grandchild due soon and something to focus on away from the savage chemo.

I have three grandchildren - twins nearly 11 and an elder one nearly 12. They have been so tolerant of me being "off" since October. I went from the active Nan - swimming and skipping etc to one with a crutch and invalid ...I just wander what they are secretly thinking !!

My first grandchild was born the same day that I started my chemo back in 2004 and so that was a frantic day !! But I beleive that he was my focus to get through it all. I always vowed I would be at the school gates when he started school - and I was with the camera !!! 

I had FEC/CMF chemo back in 2004 and lost my hair with the first bit but then it started to grow again with the CMF but it was a harder chemo to tolerate. 

I have been following Victoria Derbyshire online  and she is using the cold cap but loosing some hair so fingers crossed that you can keep yours as it does help with the moral of it all. 

Thinking of you xxxxxxxxxxx

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Hi Sharon are you on docetaxcol now ? X x

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By the way scratch is my cats name.my real name Sharon.my cat is 17 bit senile and fur old
And cant remember she's just been fed.so I thought I would borrow my lookalikes name😊
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Hi Carolyn.just got back from my daughters shower party baby due on 25feb.it took my mind off no 3 chemo till I got home.i said never again in 2004 I would rather die.amateur dramatics..when I did come back in 2013.i went on tablet chemo capevitabine.couple hiccups.but worked brilliantly for over a year.went on five holidays.just not gym anymore..lately the little creatures have nested in my liver.so with much debate I am taking my horrid tacotere
I just pray what its doing to me
Its bashing their brains out,,😈..get ct soon to see.xx. By the way god forbid anyone has to have chemo..the capecotsbine is known for no hair loss
And I had lots energy onlot days
On the docetacel I had so far tiny hair loss.cant tell.am using cold cap.hope it carries on.i have got a wig just in case..cold cap didn't work on eperubivin.years ad ago for me.its not about vanity just don't like wearing wigs...
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Hiya Sharon - After being so active until late Summer when the hip started playing up I was hypo active and now I have had the pin put in and find it so hard on one crutch , am very limited to do much more than hobble around the £1 shop or car to coffee shop so no much fun. I have only just managed  to be able to get into our car after 10 weeks - its a bit of progress .

 

I do feel for you being back on chemo as its a savage treatment and  up to now have avoided it this time around and to be honest not sure if I want to go that route again. I had it in 2004 with the primary BC and managed to get through it but I was a  lot younger and focused then.The worst part of chemo (maybe cos Im vain) is the hair loss ...somehow whatever you feel like its the loss of the hair that takes the last part of the dignity away. 

 

I am 63 and am really feeling the age now !!!