Twin sister – CC

Hi all, I’ve been on this discussion board for awhile but haven’t introduced myself. Sorry for being so rude! My twin sister, Konnie, was diagnosed with CC on January 1st (that’s a great way to start the new year – NOT!) after spending about a month in the hospital with severe liver issues. She almost died there, so thankful she is still with us. We just celebrated our 61st birthdays (but we say we are 30-1/2). In 2004 she had an abdominal CT scan done and there were two “lesions” discovered in her liver. All the doctors indicated they were most likely benign, and because she had other health issues and surgeries, recommended against doing any biopsy. This was the same advice we received as the “lesions” were followed over the years. The last CT done in 2009 showed no growth and she had no symptoms – and the issue was again discussed with doctors in 2011 or thereabouts with the same advice. Around November of last year she started feeling flu-like, and admits that her urine had been a darker color for awhile, but could not really give an onset date. She had severe jaundice and her liver function tests were off the charts. Fortunately, because of all of her other health issues, I have maintained copies of all of her medical records since 1997, and was able to provide the doctors with her past imaging reports and records regarding the liver lesions. The whole time Konnie was in the hospital in December the lesions were discussed, and once again, we heard the word “benign” frequently. Because Konnie had gastric bypass surgery in 2006, getting stents in place was difficult and took two or three separate procedures. They finally got them in, and were able to get some samples of the bile duct for biopsy. It’s been a whirlwind since diagnosis – I know many of you are very familiar with that. We were referred to a oncology surgeon at City of Hope in Duarte, CA who was wonderful – one of the best doctors I have ever dealt with (after 45 years in law and the medical malpractice field, and being a family caregiver to many, I’ve worked with a lot of doctors!) He said that surgery was most likely not possible but wanted her to start chemo – which she did. She had the issue of post-chemo fevers that were at first controlled by tylenol, but each fever got worse, which required the dreaded ER visit … at one visit the doctor put her on antibiotics as a precaution and the fever subsided but because her liver function tests were off the charts again, kept her a few days. The 4th day the fever was raging and she had severe diarrhea and was diagnosed with c-diff. A week in the hospital and she was finally able to go home. Her CA-19 when she left the hospital on 1/1/16 were around 109 (they had been much higher before stent placement) and they have progressively gone down since the chemo – a month ago they were 38.5 – now they are up to 60. She had another bout with c-diff and a week hospital stay the next chemo she took, and the ID doctor kept her on vancomyocin plus some probiotics which have kept the c-diff in check. Her white cell count was very low last week (1.4) so she couldn’t have chemo. Dr. gave her a neulasta shot and she experienced the bone pain – but something else. A pain coming up from her left mid-abdomen, up through her chest (she says her heart), up over both shoulders and into her back. It happens when she sits or when she changes positions laying down. No shortness of breath. She saw her oncologist and gastrointestinal surgeon the last 2 days and they didn’t think it was cardiac but it was not common. Ended up taking her to ER to get EKG just to be sure not heart related – EKG fine, CT of pelvis/spleen okay, blood work okay. All the other bone pain symptoms have been easing, except this one. Any thoughts or experiences you can share? Her white cell count now is too high but that’s normal after the neulasta shot. Thanks!