Member
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Registered: ‎22-04-2014

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Fab news Janette - so so pleased for you xxx

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Re: Bone mets - please join in

[ Edited ]

Great news jenette you can relax now x x 

Member
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Registered: ‎21-05-2014

Re: Bone mets - please join in

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 

Member
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Registered: ‎22-04-2014

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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

Community Champion
Posts: 814
Registered: ‎28-01-2015

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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

 

 

Community Champion
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Registered: ‎26-10-2015

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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

Member
Posts: 54
Registered: ‎27-01-2016

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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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Registered: ‎21-05-2014

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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 

Community Champion
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Registered: ‎01-05-2012

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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

Member
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Registered: ‎15-06-2015

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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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Registered: ‎16-06-2015

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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

Community Champion
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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

Member
Posts: 621
Registered: ‎10-10-2012

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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

 

 

 

Member
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Registered: ‎16-06-2015

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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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Member
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Registered: ‎21-05-2014

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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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Registered: ‎27-01-2016

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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