Twin sis with BC and bone mets

Hi all, I was directed here by Jill1998 from the main board.  I’ve resisted posting here for so long…am terrified I’ll read something I don’t want to see! My twin sister (we’re 50 in July) was diagnosed in 2017 with hormonal breast cancer (sorry not sure of the lingo or which type). She had been suffering with rib pain and back pain for a long long time. Several months before her diagnosis she sneezed and ended up in A&E with suspected cracked rib…doc in A&E didn’t xray her and sent her home with cocodamol saying she’d torn intercostal muscles. Fast forward to September 2017 and she was in so much pain in her back and ribs, and having been under the ‘care’ of the gp for suspected disc problems (still no scans or xrays) that she and her husband lined up a private ct scan. GP then decided he could do no more for her pain and admitted her to an orthopaedic ward for assessment. CT scan finally done and discovered breast cancer with mets in ribs and spine…3 vertebrae had crumbled and she had to have titanium rods in her spine in the October. She was started on hormone treatment and put on palbociclib in December 2017. It wiped out her white blood cells and she ended up in ICU in a medically induced coma with double pneumonia and sepsis. She woke up on boxing day. She spent months in rehab learning to walk. Since then she has been on hormone treatment but that stopped working last year when it was discovered she had mets in her hip and more in her spine. She’s since had a partial hip replacement, and is now on Capecitabine. On her 3rd cycle…it’s knocking the stuffing right out her. I’m not sure why I’m posting here…she has 2 kids, boy 14 and girl 9. Her husband is a total rock star, but both he and I are just living in a constant state of worry. She’s on anti depressants as am I…we are very lucky that our families all live very near each other, her family, my parents and my younger sister’s family all 9n the same farmstead. The 1st week of the cycle is awful, she’s tired and sore all over, 2nd week not so bad, and off week she’s much better. I’ve been going every other day to help her get up and showered. Does anyone else have experience of Capecitabine…any help to ease her side effects? If you’ve got this far, thanks for reading! Sx





So sorry to hear about the suffering your sister has had and the fact she wasn’t scanned earlier, it would have helped her not have such extensive bone mets. What an awful time she has had of it as well, no wonder she is needing the additional help of anti depressants.  As to how Capecitabine is being so harsh it might be she needs a reduction in her dosage. The dose is based on height and weight and although starts off at 100% it can be reduced and still be effective. She should let her oncologist know how she feels on each cycle and adjustments can be made. 
There is a thread on here, further down the page, called Xeloda/Capecitabine your top tips… It has been added to over the years so is very long but you may want to read some of it. We all totally understand what you don’t want to read but this site gives support and offers suggestions based on our own experiences so it not the scary stuff you see on the internet which can be very out of date.

Nicky  x