I also posted this on bone cancer room but this group appears to have some more traffic as it were and am just looking for - well I don't know really an still searching
Hello fellow community just need some assurance if there is any
I was diagnosed with Breast Cancer nearly 3 months ago. First time diagnosis - the wind was very much taken out of my sails when, after a PeT scan I was informed I had secondaries in my bone - small volume in lower spine and hip but non the less secondaries. So very quickly I have had to absorb that I cannot be cured, prognosis is very difficult to come to terms with.
I started on Letresole pretty much straight away and fingers crossed none of the side effects that some others appear to have had. One round of Zodalex - no side effects apart from led legs the following day cleared the day after.
However I have managed one cycle of Ribociclib. During the one week break the blood tests for one part have not held this has been the same for 5 weeks - having weekly blood tests. So am taking Letrosole only at present. Count has been coming back down week on week but they want to wait for further reduction then hopefully will look to reduce dose (was on 600mg a day) and look to put me back on Ribociclib
sorry for long bit above now for the short bit - Is there anyone her that is in my or a similar position. I have not had a Mastectomy, nor chemo so being treated with just tablets (well tablet once a day). just feel a bit isolated well a lot. any advise would be appreciated
Stronger together
Hi again IamLyn
I replied to your post in the secondary bone cancer group and I was hoping that you'd get a reply from the members of the secondary breast cancer group as it's a much busier group. By replying to you it will bump your post back to the top of the page where it may be seen again.
You could also try starting a new post and put what specific advice you are after as sometimes that will help you get a reply.
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
Hi all. I don't come on the site very often... Usually only when I'm about to have (or have just had) my 6 monthly CT scan and review.... Scanxiety! Yep, due now!
I was diagnosed with primary breast cancer in Feb 2015, and immediately twigged that my thoracic spine pain was probably something to do with it too.... Unfortunately I was right. I had chemo first, then surgery (lumpectomy and lymph node clearance) - I was lucky, my onc is quite a forceful individual and said if the surgeon says no, she will say yes she is having it! I had radiotherapy on my spine 2015 - this alleviated the pain and gave a little bit of regression. An area on my hip divided opinion, but as it started to ache a little, it too was blasted last year.... Although it still aches, so it is probably an old running injury I can feel (although I don't dispute there is cancer there).
My cancer is ER+ and HER2+, so current treatment is Tamoxifen, Denosumab and Herceptin.
Initially I found it difficult to manage fatigue, and put most of it down to cancer fatigue....however, some of the fatigue was side effects of simply not sleeping due to Tamoxifen sweats! I have acupuncture (provided free in my chemo unit), that has been a revelation! Like someone has finally flipped my on button! If it's available, try it!
I'm hoping you're sensing from this, that once you get your head around things (the psychological part is the most difficult to deal with), apart from the regular trips to hospital for 'bone juice' 
(if there's an emoji there I can't delete it!) Life goes on! I'm fairly active, I work (part time only now.... Gotta be some advantages! I walk my dogs, have completed the couch to 5k within a few months of rads on my hip.... And l probably feel the best I have in years! My onc is a great believer in staying both active and positive, and I am too.
Until I'm told otherwise, I will think of this as a chronic illness which is being well managed. I remember the dark days when I first got diagnosed and it's all so raw, but eventually, you kinda just get on with it.
Hope this helps.x
