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Newbie

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Re: Newbie

Hi Katie

 

I can relate to your struggles. I was diagnosed with bc left breast in September 2018. Had chemo then mastectomy n reconstruction and finally radiotherapy. I had a month of normality then started to get severe back pain and was eventually diagnosed with secondary bc in my spine ribs n left leg in November 2019. I struggle with not knowing what’s going to happen in the future. I too look healthy but am not the person I was. I do have family n good friends but don’t like to burden them with my worries. Hoping I can find some new friends on here. 
Penny

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Re: Newbie

Hi Mexico, 

 

how are you? Thank you for your reply. I’ve actually been in touch with a group called time to talk and they are calling me back this week for a phone chat about ways to help me deal with my anxiety. I’m hoping it helps me and I can stop feeling like I do all the time, I am so newly diagnosed I think I’m expecting miracles and that’s just not going to happen yet. 

danielle xx

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Re: Newbie

Lollipop84

 

I wouldn’t put up with sleeping badly....everything is SO much harder to cope with when you’re constantly tired.  And waking up all through the night and thinking dark thoughts is so awful.  I would really recommend you speak to your GP and ask for something to help you sleep, they have such good things these days and you don’t have to worry about getting addicted, it’s just for now.  It’s so worth it to get a good nights sleep....at least that what I think.

good luck

 

 

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Re: Newbie

Hi Katie, 

I sleep so badly also, I wake up constantly all night Long and I’m constantly tired all day 😫 not fun at all. I hope my bc behaves next week to! Xx

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Re: Newbie

Thats good you are still on 600mgs, here's hoping your BC stays stable. Yes the hot flushes are my main issue! I must wake every 20 mins or so with them! Xxx

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Re: Newbie

Yes I’ve had a low white blood count last month and had my treatment delayed a few days and thankfully they came back up and I was able to stay on the high dose of 600mg! I’m due to start my 3rd round next week and I’m praying my bloods don’t play up! The most annoying side effect is the hot flushes but other than that I’m doing really well on it xx

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Re: Newbie

Of course! Sorry still struggling with how to get around on here and answer messages. 

That is a cocktail!! And you are managing the side effects, impressive! Xxx

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Re: Newbie

I’m on ribociclib, fluvestrant, zoladex, letrozole and denosumab! Quite the cocktail  xx

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Re: Newbie

Hi, I'm currently on Ibrance(Palbociclib) Letrozole and Zemetta every 3 months. Recently had neutropenic sepsis so had to lower the dose, how about you?? Xx

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Re: Newbie

Hi Katie, oh the hot flushes are horrific and they stop me sleeping at night. I’m finding I’m coping with side effects quite well and don’t get many really so I count myself lucky! What treatment are you currently on? Xx

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Re: Newbie

Hi Danielle,  thanks for the welcome. Sounds like you have a lot going on, especially with relatively young sons to cope with! It's very hard isn't it? Yes that is quite a combo! Side effects are not great either, struggling with hot flushes, I tried accupuncture and it really does help. I had Zoladex last time I was diagnosed, I have Zemetta also every 3 months. Stay stromg and thanks for the message! Xx

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Re: Newbie

Hi woodsbonsai, 

 

thank you for your lovely reply, I was only diagnosed with breast cancer last September and was told then that it had potentially spread to my spine but it was to small to confirm. I went through 5 rounds of awful chemo to then be told it was cancer in my spine and that chemo had highlighted it but it was still small thank goodness. I know It’s to early for me to even think about getting my head round this but this week has been really tough going which hasn’t happened for a while as I was coping ok. You’ve really helped by sharing the story of the lady so thank you, I just hope in time I won’t think about it constantly as it’s draining me xx

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Re: Newbie

Hello Lollypop 84

 

sorry to hear you’ve recently been diagnosed with sbc.  It’s such a shock after what you’ve gone through with bc and that you’re beginning to get your life back on track.  Only to find its now changed forever.  

if it’s any comfort to you, when I was first diagnosed I went to a support group and met a lovely lady there.  She had been living with sbc for 18 years and was doing really well and just getting on with the things she wanted to do.  She had experienced some highs and lows but that’s what life is like.  I found it very encouraging to think that there was plenty of hope for a long term future.  I hope that helps.  Take care.

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Re: Newbie

Hi katie1962, 

 

welcome to the site but sorry your here. Sounds like you’ve really been through it health wise. I’m recently diagnosed with secondaries ( jan this year ) and I’m still in a dark place most days and it’s terrifying. I’m 35 with 2 boys aged 11 and 14, I have secondary Brest cancer in my spine in a few places. I’m now on hormone treatment of ribociclib, fluvestrant, zoladex and denosumab and letrozole so quite a combo!! Anyway enough of me going on 😂 


lots of love danielle xx

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Re: Newbie

Thank you! I will look on BCN's list of events and support groups..many thanks!! Xx

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Re: Newbie

Hi Katie 1962, the support group I go to has a mix of ages which I think you need. I’m 63 and I’m not the oldest or the youngest which is great because I think different age groups have different perspectives.  I don’t go to one specifically for sbc but there are several ladies there who have it so I find chatting to them reassuring.  Have you looked on Breast Cancer Nows list of events.  They have plenty specifically for sbc.  There are none near me but you might find something where you are.  Good luck! 

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Re: Newbie

Thank you for your reply, it means a lot! I too have a lovely family and supportive friends, but i guess they dont really understand which is why I think coming on here will be helpful. Thank you for your suggestions! I have been to a support group, I was the youngest there (58) which is not that young but I felt a bit out of it, guess i need a secondary support group I will see if there are any in the Reading area,  thanks again, stay safe xx

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Re: Newbie

Hi Katie, I know exactly how you feel.  I’ve had sbc for three years and have put on weight and lost about 50% of my hair.  I really don’t like what I see in the mirror and hate having my photo taken.  It really annoys me when people when you’re going to finish your treatment.  I am lucky that I have a wonderful set of family and friends who are always there for me, but I do think there is so little understanding of sbc in the wider public.  My best suggestion is just take it all a day at a time and be kind to yourself.  It takes a while to accept that this is your new normal (that sounds familiar these days!) and you will find new ways of making your time seem fulfilling.  

I hope it helps chatting on this website to others in the same position as you.  I go to a local support group and I find it really helpful.  Maybe you could look into something like that where you live.   Take care and keep safe.

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Newbie

Hi all. Just thought I'd join this forum as I've never met or spoken to anyone with secondary bc and feel it will help me. I've had BC x3 times now. The first time was when I was 43 (2004) L side, lumpectomy, radiothetapy/Tamoxifen then 10 years later (2014) R side, same treatment but stopped Tamoxifen due to side effects. Then eventually diagnosed with metastatic BC in 2018. Initially deposits in my lungs liver and bones( hip, spine rib,skull) had chemo, radiotherapy, then Palbocyclib (Ibrance) and Letrozole, with improvements and almost gone now in liver and lung.  What im struggling with most is a complete lack/change of identity. I had a fracture in my hip (undiagnosed) so now have a limp/stick when I was v.fit, gym daily type of person. I've put on 2 stone, had long dark hair, now short white hair..I was a psychiatric nurse but have retired through ill health. I feel completely different and don't recognise or like the person I see, despite numerous compliments from everyone, how my new hair looks so much better! I look really healthy but just feel a little lost. Sorry to go on, I'm not self pitying as I'm blessed to still be here but am struggling wth motivation etc..hopefully some of you can identify with all this..love Kate xx