MichaelSu

Forum Replies Created

Viewing 1 post (of 1 total)
  • Author
    Posts
  • MichaelSu
    Spectator

    Hi My name is Michael, I am living in Springfield PA. My sister is Lisa, she came from CHINA, she  was found to have Cholangiocarcinoma back in 2013 by routine ultrasound of abdomen ( I know that in US there is no such routine check up allowed by insurance company). She had surgery done in UPMC (cash paid due to no medical insurance in the US, international patient), followed by preventive chemotherapy. She was living well for over 2 years until a year ago, Lung CT found small masses. She had 6 months chemotherapy at Fox chase cancer center in Philadelphia, no obvious improvement. Gene analysis showed that she is a candidate for AG-120.

    Unfortunately, she was chosen in the control group, 5 months later her lung mass block her retropharygeal nerve cause coarseness, also retroperitoneal lymph node was enlarged, she was started on real drug AG-120 in Jan 2018. One cycle later, good news was, lung mass was shrinking slightly, bad news was there was spinal cord involvement, needs immediate radiation therapy (10 days) (self pay), she responded well, and allowed to continue AG-120, currently will start 4th cycle next week. She is anemic, her hemoglobin in less than 10 (9- 10), liver, kidney cardiac functions are normal, no breathing problems, her voice hoarseness is better lately.

    Her side effect include, nausea, episodes of swollen feet, abdomen ascites recently, responding well to diuretics ( I am a medical doctor, I gave her Lasix and Spironolactone).

    My sister had irritable bowel symptoms, easily diarrhea after each meal, air bloating, noisy abdomen sounds. She had to use pain pills for back pain, might be related to stretches of enlarged lymph node. Pharmaceutical company do not allowed any interventions unless they are life threatening conditions. The enlarged lymph node could be easily shrink by radiation therapy or high intensity ultrasound therapy, which is popular in CHINA already.

    I would be interested to make friends with other patients, my e mail is xuehuisu@gmail.com. God bless everyone!

Viewing 1 post (of 1 total)