Topic: New to Site - Friend has cc
I have been reading this site for a while now and feel as if I know some of you already but this is my first post. I have a dear friend, Sarah, who went to the Doctor August 19th with stomach pains and just generally not feeling very well. She was jaundice and sent directly to the ER and her roller coaster ride began. She was diagnosed with intrahepatic bile duct carcinoma stage IVB. She was in the hospital about 5 days, released, got a port and started chemo right away. She was doing Gemzar/oxaliplatin, the regular cycle of one week gemzar, one week both and then a week off. She was being treated at Virginia Hospital Center by Dr. Feigert. We went to Georgetown Hospital for a second opinion with Dr. Pishvaian and also Sibley hospital (part of John Hopkins) and met with Dr. Azad. At the time, the current treatment was working, her CA 19-9 numbers were decreasing and her tumors showed some shrinkage. I know she should be with someone who deals a lot with cc but she really felt comfortable with her Dr and at the time, things were moving in the right direction. I think he has dealt with it before but obviously not like others (I would like to see her at MD Andersen).
Around November, she started having issues with her gall bladder which caused acute pain. The doctor said it was “sludge” and gave her some medication and told her to watch her fat intake. Oh, I forgot some vital statistics. Sarah is 52 years old and the picture of health before this (I know that is the case for others) She was always watching her weight, was a vegetarian and exercised regularly. She never had fried or fatty foods so is now basically not eating any fat. We worry that she isn’t eating enough but understandably she wants to avoid any gall bladder issues.
The roller coaster continued and during a January hospital visit, a CT scan on the 20th showed some growth. According to the report, there is a large central hilar hypodense mass which extends into the hepatic parenchyma which measures 5.7 x 8.8 cm, which grew slightly from 5.8 x 7.7 cm. There are several small metastases scattered diffusely throughout the left lobe of the liver as well as a few scattered lesions within the right lobe of the liver. The largest lesion at the lower aspect of the right lobe actually decreased from 5.6 x 3.2 to 4.3 x 2.6 cm. The second largest in the right lobe also decreased from 3 x 2.3 cm to 2.6 x 1.9 cm. Her CA 19-9 started out at over 5,000 in August, got as low as 2,400 and the last reading at the end of January increased to 3,800. She took the growth in the large tumor very hard. After this they actually stopped chemo to explore other options (not sure if I agree that they should have just stopped?). We went back to Dr. Azad and she had a potential clinical trial but when she went for a visit, she had started accumulating fluid and ended up back at the hospital (apparently, the accumulation of fluid precluded her from taking part in the trial). She was released from the hospital and was feeling somewhat better, getting out some and her 30 year old son came home from Alabama and that was very helpful.
She went back to Georgetown and has been accepted to a different clinical trial – I3O-MC-JSBA: A clinical phase one trial of LY2801653. I believe Kris is doing the same trial! She will be in Part D where she will also be given Cisplatin. She starts the chemo on March 10th (her birthday) – goes in tomorrow for CT Scan and consult and Friday is biopsy. I am so glad she is doing something since her last chemo was January 8th and with this nasty cancer, if she doesn’t do something, I worry that the cancer will continue to grow. Her biggest problem of late is fluid retention. She goes and gets it drained – last week she went Tuesday and Friday!
Sorry for the long post but I wanted to give as much information as I knew. Not being family or able to be at every appointment, I don’t always have the details. At times it is obviously overwhelming for Sarah and I also don’t want to ask a question to the doctor that may upset her. She isn’t married at the time, her son is 30 and lives in Alabama and comes up when needed. Her mother has been staying with her but bless her heart, she is 87 years old and although sharp as a whip, this is surely taking a toll on her. I thought it would help for Sarah to possible meet or talk to someone who has cc. We are in Alexandria, VA and I know I have seen many posts from Holly22A (Diana) who lives in DC or there may be others locally. Maybe I could get her to talk to someone who is dealing with the same thing she is.
Any thoughts, advise, suggestions are welcome as we all continue this ride! I am extremely impressed at how informed you all are. I don’t believe Sarah has been on the site – I’ve told her how wonderful it is but I think she gets scared to see some of the less positive info. I tell her of the many people who have battled this for years to try and encourage her. Let’s hope those stories continue.
Thank you all and for those on the east coast – hope you are having better weather than here in Virginia. It is snowing and we must have 6 inches on the ground. I am ready for Spring!