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Secondary Private Group

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Re: Secondary Private Group

I'm similar to you Sandi54, I was diagnised with SBC last November as my 1st experience and diagnosis of BC. I had 6 rounds of EC chemo with goid results and have been on palbociclib and letrozole since March and also denosumab 4 weekly injections. Scans have shown all remains stable and I feel well with only a few minor side effects. Just hoping this situation remains for a long time yet. I felt my future had been robbed from me but now have a new lease if life and intend to live it as fully as possible. Hope you do to.x
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Re: Secondary Private Group

Hi, I was diagnosed with secondary breast cancer last November. I am also on Letrozole and do get bone pain but I am also on Denosumab and Palbociclib which makes me very tired but the doctor told me I would get bone pain from the Letrozone. I was on Tamoxifen for 7 years first and my cancer only returned because I wasn't swiched over to Letrozole. Good luck you may not get the side effects. Another side effect I noticed was my hair going very thin anyone with ideas to stop this happening.
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Re: Secondary Private Group

I have been taking
Letrozole for 2years 8 months, side effects I have had is bone pain and sometimes depression I've been exhausted but find if I have had a buzy day yesterday I need to have a quiet day today. There are women in our group that has been on it for 6 years and finds only the exhaustion and bone pain gets her down, on bad days I take it easy and think of my children and grandchildren that gets me through, on good days I make memories with them and my friends. Good luck with your medication you never know you might get no side effects ❤️

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Re: Secondary Private Group

Please try as the people of glasgow are great and very friendly. I attend Edinburgh one but go to glasgow a lot for shopping etc.

 

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Re: Secondary Private Group

I have been taking 

Letrozole for 2years 8 months, side effects I have had is bone pain and sometimes depression I've been exhausted but find if I have had a buzy day yesterday I need to have a quiet day today. There are women in our group that has been on it for 6 years and finds only the exhaustion and bone pain gets her down, on bad days I take it easy and think of my children and grandchildren that gets me through, on good days I make memories with them and my friends. Good luck with your medication you never know you might get no side effects ❤️

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Community Champion

Re: Secondary Private Group

Camilla, I've had many over the years. Currently on Exemestane/Evermolimus. I've been on it a year now. FF

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Member

Re: Secondary Private Group

What treatment are you having Funnyface? 12 years battling on is fantastic. 

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Re: Secondary Private Group

Hi Verfel

Welcome to our group even though I know it's a place you'd rather not be.

 

I don't have any answers to your particular questions but there are several women on this forum who are or who have been on letrozole. I'm on another hormone inhibitor - exemestane.

 

A lot of us hang out on the 'Bone mets please join in' thread so have a look on there. It's not always totally serious.

 

Good wishes Bon xx

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Re: Secondary Private Group

Hi all, Im from way down under in NZ, and have just this last week been diagnosed with Metastatic Breast Cancer in my Sternum.  It is Stage 4, and I cannot have any Chemo or Radiation as its right over the top of where I had Radaiton 20 yrs ago with my first case of BC.

They have put me on LETROZOLE , so now awaiting the side effects, if Im too get them.

Is there anyone else out there with something similar to me?

 

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Re: Secondary Private Group

hi all

Just found this group, I have had breast metatases for last 3 years and I am now in remission. I have been on tamoxifen as it was oestrogen feeding my tumour. My secondary was found first and my primary showed itself July 2016.

 

In September last year I began chemo as I had a small spot on my liver I had 6 cycles of chemo and great news the spot had shrunk.  I am now on letrozole. and touch wood  I haven't had the side effects yet.  

Can't wait to be able to join the group properly xxxxxx

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Re: Secondary Private Group

Glad to hear you found going to the Glasgow group helpful. I live in Glasgow and would love to go but I am a bit shy. I’m okay once I’m there and it’s nice to know that they are a nice bunch. Will try for next month x
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Re: Secondary Private Group

I’m still waiting for a secondary confirmation. It’s like the secret service. Meanwhile I was examined on 24Jan not by my usual surgeon and told to come back in 6 months. Thurs an appointment from my surgeon arrived for the 26 February. Is there something wrong? Every day is another surprise just when you feel a bit more settled.
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Re: Secondary Private Group

Hello Clarence

I see you have posted on another thread now and please join us on bone mets which is a active thread.
Anyway like you I had never heard of adrenal glands and haven't seen much posting here either. .I have bony mets and was surprised when oncologist said after my last scan. .they were responding well to lettozone! ! I had of course to Google as didn't have a clue even where they were ...I don't think it's that common amongst the ladies here ...they sit above the kidneys so maybe explains why I wee so much at night !!
Anyway I try not to fret too much about them and take a day at a time .
Hugs xx
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Re: Secondary Private Group

Hi Clarence, I'm sorry you are going through such a tough time, We have Many ladies here with secondary's going strong 10 plus years on, if you go to the living with secondary breast cancer thread https://forum.breastcancercare.org.uk/t5/Living-with-secondary-breast/bd-p/4495 you will find ladies you can talk to who can help reassure you that there is help and life beyond this Xx Jo 

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Re: Secondary Private Group

I’m going on Monday to see if 2 nodules in my Lung plus they saw my adrenal gland was fuzzy.are malignant.
I never see anyone mention the Adrenal gland. I have had major depression for 2 years so it’s like a double whammy. I’m so depressed and don’t see an end as my life will now be scans. Anyone got anything I can cling on to?😢
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Re: Secondary Private Group

God that’s inspiring hope for me yet then x
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Re: Secondary Private Group

Me too as this is my first time tnite x
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Re: Secondary Private Group

Hi I’ve joined the group but forgot password and have chemo on Tuesday so struggle to join till tnite and really struggling emotionally so do I need to ask to join tnite and join in with chats on other secondary bits then try to chat next week on the live chat as I’m conscious of the time too x
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Re: Secondary Private Group

I was diagnosed about a year ago, by the time they had done the tests and a biopsy. I feel well but am on Capecitabine which has its own side effects. Also Denosumable.

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Re: Secondary Private Group

Hi. I have secondary breast cancer. I am not accustomed to forums and can't seem to get on to anything. You keep send me texts about the Tuesday forums so I am trying now but not getting anywhere.

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Community Champion

Re: Secondary Private Group

Ladies who are posting on this thread,

 

Now that you have been welcomed. I wanted to let you know that this thread is for ladies who want to ask the moderators to join a private group. To join the private group you need to be active for awhile on the forum. Just to chit chat most people chat on the bone mets thread, even if they don't have bone mets. FF

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Re: Secondary Private Group

Thank you for very warm welcome ! I am 46 year old mother of two girls , 20 and 15 .Must admit diognosis of secondary BC came as surprise , although of course fear of cancer returning never leaves you.... I was extremely busy having fantastic life after few years of unfortunate events, feeling mentally and physically best I had in years ! So when I start having pain in my pelvic bone cancer was at the bottom of my list . So glad I found this site where you , beautiful people, share you pain and hope ,happiness and saddens.
At the moment I am having Herceptin , perjeta and denusunab every 3 weeks and also letrazole tablets daily. Seems to be working according to my recent scan , tumour is not growing and bone met is stable . So I am hoping it will work for as long as possible.Feeling ok between treatments just really painful joints , I keep forgetting I can’t move as fast as used to !
Xxxx
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Re: Secondary Private Group

Hi, you sound similar to me. primary in 2005-2006 then diagnosed (by fluke) in April this year. I have several bone mets and lungs too without symptoms. I had some radiotherapy on my arm because it was preventing me from doing normal things, but the rest of the bone mets the doctors don't seem too concerned about (they're not the one in pain...). I'm on Tamoxifen & Goserelin with Denosumab due to restart soon (following teeth problems). I found it really encouraging that lots of people are on here for years - it was a shock when I found out it had been hiding inside me all that time as I'm sure it was for you too.

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Community Champion

Re: Secondary Private Group

Welcome Capricorn13!! I also went 10 years before the cancer set up camp in both my lungs, lymph n I des in chest, and after a few years one spine met! My primary was Oct. 1995! My secondary was Nov 2005. I've been doing this secondary BC for 12 years. Keep fighting! FF

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Re: Secondary Private Group

Hello lovely ladies . I have been following this site and chats for year now and found it very helpful, got me through some very difficult times , thank you . I was diagnosed with secondary bc October last year , 10 years after my primary diagnosis , almost to the day ! I have secondaries in my pelvic none and also large tumour on my right lung which was a big surprise as I didn’t have any simproms . I had chemotherapy, radiotherapy to my pelvis and now on maintenance treatment every 3 weeks .
I am not sure how it works but can I join the group ? Please? X
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Community Champion

Re: Secondary Private Group

Dozy Dora, I just saw your posts. Letrozole gave me unbearable joint pain in my knees! I did it for 21 months. I will say about a month after stopping my knees greatly improved! Hang in there! FF

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Re: Secondary Private Group

I just started typing. I too have it on both lungs. I am on letrazole and have been for 2 years now. I think the waiting for results is awfull it plays havock with your mind. Good luck with your results.

 

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Re: Secondary Private Group

Hi I am new to this so please bear with me. I just want to chat. I have metastatic cancer in both lungs, meds are keeping it at bay but the bone pain is awfull. I am on Letrozole does anyone else have this problem?

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Community Champion

Re: Secondary Private Group

Welcome Celia, The best place to post is under secondary breast cancer ...the bone mets thread. You will find comfort, support and friendship here! FF

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Re: Secondary Private Group

Hello, my name is Celia. I have had secondary breast cancer since 2014. I was taking hormonal treatment such as Tamoxifen and Letroxol which gave me psychiatric problems. I stopped taking those and am waiting to start capcitamin. I have been very slow to start this as my confidence in the oncologists has been affected but now that the cancer has spread to my lung, liver, intestinal and spine, I feel more positive about the chemotherapy and have read positive comments on this site. I would like to join this group.
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Re: Secondary Private Group

Hello allie
Welcome to the forum ..please join us on living with secontrary bc ..bone mets ..it's a busy thread but always someone there to help you ..we have a lot of everyday banter there as well.
Hope u can join us soon on private forum too.
Hugs xx
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Community Champion

Re: Secondary Private Group

Allie, I believe you have to post a few times here on the open forum before you are allowed to join the private forum! They need to feel safe that you are for real and sincere. It's a protection for all of us. Good luck and welcome! FF

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TVRe: Secondary Private Group

Hi Allie,
I post quite a bit on the Secondary Private Group. I was treated with doxetaxel 3 weekly for 6 cycles. Found it hard going but it worked well. You can read what I've written on the Secondary Private Group when you join under Taxotere help. I'm now on paclitaxel which seems to be going well and I've written a few places on the main site about that too. You can also personal message me but it takes a few weeks usually for you to be OKed for that
Best wishes
Waffles xxx

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Re: Secondary Private Group

I have asked to join this group I was diagnosed with metastasised breast cancer in May this year. This is my first time having cancer and my treatment so far has been 3 weekly docetaxel which I have had 5 out of 8. I'm feeling lonely and fearful. Hopefully joining here will help.
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Re: Secondary Private Group

Could I join please
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Re: Secondary Private Group

If you want to turn off emails go to 'My profile' and then check the box 'Don't send me any community emails'

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Re: Secondary Private Group

same here , would be grateful if they were switched off soon 

 

thank you x

 

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Re: Secondary Private Group

I am glad its not just me. I think ive been switched off the games could you confirm lizzy. If you can i would like to stay with the group. X
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Re: Secondary Private Group

I got them to begin with and then someone from BCC turned them off. If they hadn't I wouldn't be here. I don't know why they think they are a good idea.

B

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Community Champion

Re: Secondary Private Group

Lizzy, Is there a way to stop the e-mails? They are annoying! FF

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Member

Re: Secondary Private Group

Hi lizzy. Can you take me off this thread as im getting too many emails. Its the games ect. I dont do things like that and im getting loads.
I will keep with the other two threads i follow.
Thanks maldives xx
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Member

Re: Secondary Private Group

Hi Acorn59,

 

I have now enabled you access to the group.

 

Best wishes,

Bonita

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Member

Re: Secondary Private Group

I have been unable to join this group... 😢

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Re: Secondary Private Group

Hi Lizzy thanks for letting me join the secondary private group
Never thought I would be here after being six years Bc free
I had my second Kadcyla this week after six months
of chemo not working at all
Feel as if it it taking me so long to pick up still in pj's since Tuesday would love to know how others are coping or any tips
Have tumour on my left lung and in my sternum
Best wishes and hugs to all in group x
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Member

Re: Secondary Private Group

Hi mrswright87, 

 

Sorry you are having problem accessing the group. You should be able to see it here.

 

If you have any other problems please do let us know at Moderator@breastcancercare.org.uk 🙂 

 

Best wishes, 

 

Lizzy 

 

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Member

Re: Secondary Private Group

Hi i have lost the secondary private group.. its not showing up on the list anymore ? it seems to have vanished. does anyone have the link please
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Member

Re: Secondary Private Group

Hi

I requested to join the private group yesterday, how long does it normally take to be accepted? hugs x

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Re: Secondary Private Group

Hi, I would like to join this group please. I was recently diagnosed with BC with secondaries on my lung and awaiting a bone scan. On Tamoxifen and due to see chemo man in three weeks (feel like I have been waiting forever for one test result after another). Really struggling to cope at the moment and hoping talking to ladies in same situation will give me idea's on how to cope. I'm a 47 year old mum of 1 daughter, 18 and very happily married. (I can't see button to join group).

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Member

Re: Secondary Private Group

Hi Carolann7,

 

Sorry you are having trouble accessing and asking to join the private group.

 

I hope the below helps 🙂 

 

1. Firstly click on the Secondary Private group board as circled below.

 

 

Boards.png

 

 

2. Once you have clicked on the group you should be able to see the 'Ask to Join group' button on the right hand side. (just to note, you need to be logged in, in order to see this button).

 

Circled Ask to Join button.png

 

If you are still having problems please do get in touch at moderator@breastcancercare.org.uk .

 

Best wishes, 

 

Lizzy 

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Re: Secondary Private Group

Hi would like to join this thread, i cannot see the button that says ask to join?