Nicky just read your comment to Lesley and one thing stood out for me…how lonely it is with this.
I’m feeling so disconnected from the world and my life. People who used to ask me for help don’t any more…probably being kind really as they don’t want to burden me. In turn I’m withdrawing from everyone and that’s actually making me feel more on my own than ever. 
x
Thankyou to everyone for their advice I really do appreciate it … We are still waiting for results of biopsy for mouth … Then hopefully a treatment plan will be put into place and mum will get some advice for the pain and be able to get her strength back up again thankyou again for all your kind words xxx Laura
Vix it’s sooo awful the emotions ya go thru and it’s not even me facing diagnosis and treatment! The guys on here are fab and I find if I’m starting to despair that there’s always someone here offering hope!
Hope u feel less lonely soon! God Bless
Thank you Dinky and Nicky
Nicky, my original primary dx was 9 years ago and you’re right, it definitely sorts your friends. This is now happening with more or less a whole new set of friends, mainly school Mums. Everyone is so supportive but then I think this is me now and eventually people do forget but I will be this new me and there’s only so much other people can take. My GP (who is wonderful and easy on the eye haha) 
told me to stop worrying about everyone and worry about myself. Easier said than done though. Funny you mention family, I can already feel the Christmas stress coming about what they can buy the kids and what we’re doing etc. and I’m just thinking as much as I want a fab Christmas I’m struggling to feel motivated about it, but my Mum will just carry on getting stressed over it as though this isn’t happening because I seem and look fine.
These forums are great as everyone gets it.
Vicky xxx
Hello to all Newbies it is good to see you all joining in with your posts.
Exemestane does have its se I was on it about 18month 16month Everolimus although it was hard to define which caused which se but I too had a dry cough during the treatment. Infact I also suffer with a dry throat in which I carry cough sweets and throat spray with me all the time. I am now on a new treatment and it will be interesting if I carry on with the cough.
Nicky thankyou for making me question the Receptor Status my onc gave me quite a bit of time and explained quite alot. When I first got my cancer in 1996 it was a Ductal cancer and I was HER2- but when it returned in 2013 it had become HER2 plus sorry upper carrage isn’t working Anyway it made me understand more. The first time I was just pleased they had got rid of it or so it seemed and little was said about getting it a second time then. We didn’t have BCC then and computers were not as widespread as they are now so thankfully we now can share our experiences.
Best of luck to you all xxx
Janette no I haven’t seen that but it sounds exactly how I’m feeling, but yes I’m a tough cookie and pick myself up, plaster the smile on, and attempt to function as best I can. XXX
Belinda that is amazing and gives us hope. I’m so glad to hear you have kept well for so long and I hope you manage to find more treatments to suit you. I’m 40 with two little ones so I need to believe I can at least see them through their childhoods. XXX
Much love ladies, Vicky xxx
Hi everyone not sure I shoild be asking b this question here or on the treatment page but here goes. I have been on cape for three cycles and just started the fourth. I have developed a lot of breathlessness especially after walking up stairs. before I started cape my onc said my mets had developed in my lungs about six months ago and the e/e treatment I had before cape wasn’t working . What I am asking is has anyone had breathlessness with cape or is my lung secondaries making me breathlessness! bit scared and not seeinf my onc for three weeks.
Thankyou for the advice … It is also nice hearing someone has gone through : going through the same thing … u feel like your the only one … Thankyou again for your reply xxxxx
Hi Jannette when I first had letrozole my breast nurse told me it takes at least 6 weeks to kick in. I had it for a year and it worked great…since then have had a year of uncertainty on cape now results of scan next tuesday hope its working as we know scan anxiety!
Hi Edwina, to reply to your question about Capecitabine and breathlessness, I don’t have lung mets but I felt increasingly breathless on Cape, even walking upstairs sometimes made me feel weak and I was permanently tired. Cape was an effective chemo for me, was on it 2 1/2 years but I notice that I have gradually started having more energy now that I’m on Faslodex.
I just wanted to share my experiences in case it is the Cape and not your lung mets x
Hi all,
This is my first post but I have spent a lot of time reading the forum since my secondary diagnosis in July of this year and found it immensely helpful. I was originally diagnosed with Er +and Pr + IBC in 2006 and treated with chemo and mastectomy then Tamoxifen for 5 years and then Letrozole. I stayed symptom free until I developed sciatica and a bad limp this Spring while on Letrozole.I was diagnosed with bone mets in my spine, pelvis and sacro-iliac joints. I was treated with Exemestane and Zometa. Initially pain seemed to be not to bad but in the last 2 months I had more pain although the limp has gone. I had another bone scan and found out yesterday that the treatment has failed and that there is significant progression in the existing met sites although, not any other bone mets as far as I know. I will get a CT scan soon to check elsewhere.
I will have a week of radiotherapy next week and then am due to start capcetibine after that.
I feel very downtrodden and fearful for the future. Has anyone else failed with their first anti hormone treatment so quickly and gone on to get good results with other treatments?
Sorry for going on a bit.
Thankyou Janette and Pleasant for you replies. It is so good to speak to people who understand exactly what you are going through.
In answer to your question Pleasant - I never thought to ask about testing my mets as I only have them in my bone and I didn’t think it was that easy to do a biopsy. I will ask though.
Thanks again ladies for making me feel so welcome and I have my fingers crossed that your treatments go well. x
Welcome Waffles to our thread but sorry you need to be here.
Do any of you take Denosumab one of the se is it can cause sciatica I had it 18 month ago after I had been on Denosumab a year or so. At the time I was also on exemestane and Everolimus but before that Letrozole which didn’t work for me. I took paracetamol and Codeine 4 times a day.
Best of luck with it x
This is my first post. I was diagnosed with secondary breast cancer in May. I have mets in my pelvis. I feel so uncertain wrt my future.
Thanks Pleasant1 
Yes I am on chat girls…I have learned so much from there already. Xxx
Hi waffles, sorry to read about your progression. We have a similar dx timescale. My primary was in 2006 er/pr+ and then after 4 months of symptoms/investigation the shock of recurrence in lymph node and bone mets dx June this year after really feeling I had moved on. I originally had mastectomy but no chemo and no Tamoxifen and now on zoladex, Anastrozole and denosumab, currently waiting and hoping it works. I hope your new plan keeps it at bay. It’s a horrible feeling to be wondering what the future holds with this. Love Vicky Xxx
Hi everyone,
Posted in a couple threads, but noticed they are inactive for a while now. Apologies for the length and any double posts!
Joining this thread not as someone with cancer, just a daughter who needs some hope. My mom was diagnosed 3 years ago with Breast Cancer with bone mets. An incurable disease. It has been a rollercoaster of a ride, to say the least. My mom has taken Letrozole for 3 successful years, while also receiving radiation for bone pain. Recently she was switched to Tamoxifen after more bone mets caused her pain. He onc who gave her the radiation said she can have bone mets, but if they are not causing her pain, there is no need to treat. Now that her pain started again, she was taken off Letrozole as it stopped working they believe.
She now has pain in her right hip, but Xrays don’t see anything significant that would cause it. The morphine she is on does not touch the pain, but Advil (anti-inflamatory) does. She doesn’t feel it’s the cancer, the docs are unsure. She is being sent for CT scan, bone scan, and MRI. More waiting. We met with a resident doc (as her normal doctor has been away for 3 months and didn’t mention she would be away) and the resident said if Tamfoxien doesnt work then she will be switched to a Chemo drug “which is not easy to handle.” The bedside manner of the resident was less than ideal (putting it nicely). She came into the room not really knowing about my mom’s case. When originally diagnosed, they said there was no point in removing the breasts as it has spread. The resident said “why didn’t you have surgery”? and kept asking what we planned on doing. I was so confused and scared. She made it sound like life was over for my mom. Maybe Im too emotional to think clearly.
So my questions are:
Has anyone stopped taking Letrozole/Tamxifen and started Chemo? Success?
Are there options after Chemo?
Is it normal to see several different docs that don’t know the patient?
Do you take pain killers for the pain? How much?
How do you all stay so strong? My mother is a trooper, me an emotional mess!
Hi CMcCallum,
I was only diagnosed with secondaries in the summer and can’t help with any of your questions but I do have much the same concerns for myself as you have for your mum. I do agree that it is inexcusable that a doctor should see a patient without reading over the notes properly. I would have been very upset about that too. Best wishes x
I’ve been a bit down hearted this week as was told that I had totally failed to respond to exemestane which was my first treatment since my secondary bone diagnosis. I will be starting cape in the next couple of weeks after radiotheraphy so your post is just what I need to read just now. Best wishes.x
Hi everyone…well went to see onc today to get scan results…not good she said the cape was not working and she was worried about my liver mets which had grown much larger. This was the first time I had been told I has liver mets as well as bone and lung so feel very down . Up to now I had letrozole for a year and since then e/e for 9 months which slowed things down a bit and 3 cycles and 1 week on cape. She recommended intravenous chemo paclitaxel weekly. I said what are the chances of this treatment working and she shook her head slightly and hopefully it may work and that my cancer was hormone based so she had some other options if this treatment fails. I wonder if anyone here has had this, I feel so downhearted that my first chemo cape failed does that mean I have less chance of any chemo working? My onc talked a bit about end of life care which made me feel even worse! I am going to loose my hair is it worth going for a cold cap? My onc said she would get my breast nurse to call but not sure what to say just hoping something will work. Sorry for the rant so scared and family all look devestated x
Hi Edwina,
Sorry you are having to change treatments, it’s hard to cope with. . I too had letrozole (for 4 years for lung mets from the start), then Sept '14 it stopped working, and added in liver mets, onto e/e till March '15 which didn’t work, then cape which wrecked my stomach and didn’t work. May '15 added in bone mets! May I did 12 weeks of weekly paclitaxel. It reduced all the mets and since it finished in Sept I have been on tamoxifen and had further slight reduction. There is no reason to think the paclitaxel will not work! I did the cold cap and keep my hair. It did thin and I got two bald patches, but I could cover them and I am still losing a bit but I have/had very thick hair so it’s not been a problem! Eyelashes and eyebrows lasted all thru chemo and went about a month after it finished but came back very quickly! I have quite extensive mets, including chest wall and have just come out of hospital after a pleurodesis to stop pleural effusion returning, and my Onc tells me there are still plenty of other treatments.
Good luck with your treatment!
Glo xx