Hi, I’m Teddie, and I was 53 years old and post menopausal when I was diagnosed with bone mets in Dec 2017 (x2 hotspots in pelvis – left iliac bone, and left inferior pubic ramus).
I turned 54 years young this January, and had my first normal mammogram at the age of 50.
I was devastated when told I had bone mets. This was a huge shock because it was a routine screening diagnosis, and I had no idea of the underlying problem, and had no obvious symptoms. Additionally I was regarded as low risk having never been a smoker, and having no known family record of breast cancer. I’ve been a vegetarian for 30 years, low weight, and have enjoyed a relatively fit & healthy lifestyle (a mother of one, and proud owner of two lovely King Charles Spaniels). I still manage to walk 2 miles every morning with my dogs, which has kept me going in the last 5 months.
In NOV 2017 I had a right mastectomy, and axillary clearance (x16 out of x18 nodes were affected), with immediate reconstruction. It was discovered that I had grade 2 invasive ductal carcinoma breast cancer HER2 negative.
There was no other bone disease seen on CT scan, and no other evidence of visceral metastases.
I am based in the UK and in NOV 2017 Palbociclab (Ibrance 125mg) was given NICE approval and so I was put onto this course of treatment along with Letrozole (2,5mg). I haven’t had chemotherapy or radiation therapy to date.
I am a couple of months into this treatment and although I have some common side effects such as some tiredness and general aches and pains, and not sleeping as well as normal, and looking a bit pale. Other than that I am generally feeling ok. I have taken one of your wonderful recommendations today and bought a heat pad which is immediately helping a lot. I take ibuprofen sometimes, but try to avoid taking pain killers if I can.
I think I may be starting some hair thinning and may ask about taking biotin which some of you do. I am also trying Planteur caffeine shampoo & conditioners which I am told can help.
I have regular blood tests, and my first rescan will be after several cycles of Ibrance to confirm that there is no evidence of progression outside of known bone areas (Pelvis). So far I haven’t been put on Bisphosphonates / bone strengtheners, due to there being very low volume bone disease in these two areas.
I have read about stereostatic radiation for bone mets on this site, but don’t know if its available where I live, but will ask my wonderful oncologist when I next see her.
I am very grateful to have found this site and to read about all of your experiences, and although most of you are in the US its great to hear of some positive results about a treatment which is relatively new here in the UK. Good luck to you all.
It really helps to hear your stories and what you have all been through. I’m really happy to join this forum.
I think I’m at the stage where I accept that I have a chronic illness but want to make sure that everything possible is being done to treat the cancer.
Thanks for any information, or insight into experiences you can give, on this condition.
Its encouraging to know that a lot of you have been on Ibrance for so long, when it has only just become available on the NHS as a treatment in the UK.
Its’ been a whirlwind since I was first diagnosed with Breast Cancer in Oct 2017, but I am lucky to have a supportive husband and family, and although I’m living with it, you would never guess that I have stage four breast cancer.
Thoughts with you all.